BEVERLY HILLS—I am one of the many millennials that refer to organic, holistic and more natural approaches to health care. However, there are times when you need real old fashioned medical help. Receiving health care isn’t a problem for most because we have laws in place to protect patients from discrimination and being denied health care regardless of your situation.
However, what happens when the health care facilities become so big and powerful that they are above the law? This is happening more and more in so many places. I am going to bring to you a series of situations that has happened to me personally at my local hospital. I am starting with the most recent and will go backwards in time as my health allows… sharing with you truth, photos, videos and shocking detail of how Cedars-Sinai treats me, just one non-verbal deaf person behind closed doors… it will make your skin crawl.
My health took a major turn for the worst in May 2018, after a freak accident where my ear drum got ruptured. Something that should have healed easily… but it didn’t. The infection was in my mastoid and quickly spread, affecting my entire body. It was a mystery to the dozens of doctors I saw, specifically at Cedars-Sinai.
I was referred to an Infectious Disease doctor, Dr. Benjamin Bluen, by my Otolaryngologist, Dr. Yu-Tung Wong. He was concerned by the various ongoing fungal cultures being reported back from the lab along with my quickly declining health…which took me nearly overnight from a healthy athletic person, running and completing 5 full marathons to being bed ridden and unable to walk to the restroom due to severe chronic pain and debilitating weakness.
Thanks to the help of the amazing, mindful, intelligent Dr. Wong, we figured it out. The combination of my ruptured ear drum with the invasion of toxic in my home, intensified by a water-filled ceiling collapse, was nothing short of a deadly mixture for my immune system. Little did I know it at the time that mold kills.
Even though Dr. Bluen didn’t figure that out, in spite of the fungal infections that were popping up on all my cultures, nor did he even ask if my environment could have mold in it…I still trusted him because he came from Dr. Wong’s suggestion. Dr. Wong’s skills far bypasses anyone I’ve ever met. So when Dr. Wong suggests another doctor, I expect that doctor is in the same ranking as Dr. Wong, himself.
In April 2019, I removed myself from the mold exposure, still too ill to figure out whether I will fix my home or find a new one…so I am an hour away. I still continue to use Cedars-Sinai as it is the only hospital I have ever been to and it is my home town.
My immigrant grandfather came from Beirut, Lebanon and his first job in America was at Cedars-Sinai. I fundraised millions for The Thalians Mental Health Clinic since I was a wee child. I donated so many countless hours on fundraisers working with Debbie Reynolds and Ruta Lee and my family’s celebrity management company completed their web site for many years… free of charge.
Cedars-Sinai is all I know and they are the best of the best… well, that is… if you are not deaf.
Toxic Mold Illness is severe and it covers basically your entire body and to get it under control, you need good physicians working on top of the diseases and good care.
Since 2018, I have been asking… and begging… for a primary care physician at Cedars-Sinai, but have been continually rejected because somehow they think deafness is contagious. Finally, after getting rejected in the same fashion as this week by Dr. Michele Neeley (story to come), customer care apologized and paired me with Dr. Stephanie Tran.
Dr. Tran was great, but then she dropped me because it turns out she is living in the same building as me in Beverly Hills and has suffered from the mold exposure as well. I did not even recognize her or know her, but she recognized me so that was the end of that. She found it a conflict of interest… I did not. She told me to find someone new.
I managed to find a great primary care physician in San Diego. One that doesn’t mind I am deaf. I have to go all the way to San Diego because not one physician (out of 27 attempts) at Cedars Sinai would treat me.
So now I am still battling this problem and it has spread.
I have systematic infections spreading in my jaw bone. However, my immune system is too weak to handle the surgeries. So they are doing a little at a time, then redoing them because my body doesn’t heal and it creates more of an infection at the surgery site… which was why my doctors decided I need to see an infectious disease doctor again for guidance on which antibiotics I can use as I am now showing allergy to all of them. Plus I needed IV treatment a few weeks ago and that was a disaster because my veins are not working properly.
So naturally, I chose Dr. Bluen, because he is trusted by Dr. Wong and I trust Dr. Wong without any question.
On March 3, 2021 I set up an appointment with Dr. Bluen’s office via my office, asking for a sooner time. I was told this was the soonest. They were instructed and reminded I was deaf and needed an interpreter. Even though it states “DEAF” all over my record as if I am labeled as a contagion.
However, I have become smarter because of the countless times I have waited weeks or months for my appointment and traveled by private driver all the way there to have been rejected health care by Cedars Sinai, treated poorly and denied services and interpreters without any notice. So this time, I had another person in my office secretly contact Blue Shield of California and have them send an interpreter. So now I had two arranged interpreters 3 weeks before the planned appointment… So I thought.
I took Uber which was over $200, one way.
I texted my office while I was on my way asking them to make sure an interpreter was present. Just to be extra certain.
Isabel contacted Dr. Bluen’s office on my behalf at:
3:01 p.m., no answer, left message
3:12 p.m., no answer, left message
3:14 p.m., no answer
3:35 p.m., no answer
Oh, but where were they? A fully staffed medical office. Why wouldn’t they be answering their phones in the middle of the day? Well, I was soon to find out that there were about 4-5 women working, all talking, joking and hanging out amongst themselves.
This isn’t the worst of it.
I went up to the office and saw there were no seats or places to sit and they locked the door, it had a buzzer to use and so I went back down to sit on the curb outside the building. I have to sit. It is painful to be upright. Just walking 5 feet is tremendous pain which penetrates my body from the bottom of my legs up to my torso.
Finally, since they were not answering their phones or calling us back, I went back up and rang the bell at the time of my appointment.
Out comes a very abrupt, insensitive, rude, uncompassionate, ignorant unprofessional employee called Alejandra, even though the name on her badge is Maria Carlos.
She is talking through her mask. I point at my ears. This has worked everywhere. Strangers, homeless people, little children, foreigners, grocery store…all understand what that means. She obviously didn’t and continued to talk to me through her mask, seemingly becoming annoyed that I was not able to reply. I continued to point to my ears.
She forces on me anti-bacterial hand lotion and hands me a new mask. She writes back and forth with me but still keeps talking to me through her mask. I am nearing tears while I am in tremendous pain and in need of a seat. She makes me wait at the door way while she goes back and forth, I guess getting information on how to handle a deaf patient… instead of offering me a seat while she investigates whether or not she is allowed to let me in.
She finally points to where I am to sit. I turned on my captioning app to alert me as to what is being said in the room.
She writes to me on a post it note, “Are you the interpreter?” Then asked me repeatedly if I am the patient. Then, not even respecting me enough to address me by my correct name, saying we have to reschedule… not once but twice.
Let that sink in a minute. I am not speaking. I am pointing to my ears. I am obviously not understanding a word she is saying through her mask and she writes on a piece of paper asking me if I am the interpreter. How is it that Alejandra even has a job at a doctor’s office?
As she is rejecting me. I am not willing to just leave. I want the doctor to see me, with or without an interpreter. They argue with me…they were not going to see me without an interpreter. Even though I can lipread. They have clear masks. I can write, they can write. I have apps that both caption verbal words and speaks my words. I can facetime a person to interpret.
Sure… none of those are really proper accommodations per the law. A law that has been in existence for more than 30 years, however, it is a way of fixing their INADEQUACIES and allowing me the immediate health care I need. They write to me again different verbiage, same thing… “we are not going to see you today”
My last attempt to be heard, I make it clear by typing and in no sense exaggerating my words… “I am dying” and all she does is nod her head clearly validating her anti-social personality… telling me to reschedule. I then continue to type on the same note.
Everything else that happens is not relevant although you can read for yourself.
Once again, I leave Cedars Sinai crying and exhausted. I sat and waiting on the curb to catch my breath to figure out how to get the help I need without the humiliation.
I spent my last bit of energy to shower, dress, stumble to an Uber on crutches in pain (level of a 8/9), short of breath, dizzy and weak. Then on my way there fighting the nausea from the motion of the car all the way there. I get there expecting to find a sympathetic office to quickly give me the meds I need to help cure my infections, including a UTI which has been increasingly more and more painful while I waited the three weeks for this appointment…
Instead I get an uninformed, group of employees standing around socializing confused as to if I am the interpreter or not and completely ignorant to know of my situation and worse yet… that deaf means you can’t hear and the fact I’m not talking means I am nonverbal.
It was so foolish of me to think that Dr. Bluen’s office was as good as Dr. Wong’s office who has not once let me down in spite of the daily/weekly/monthly interactions and in a much larger office.
It was so foolish for me to think that both interpreters would not show and that they would answer their phone to give me enough notice to find another interpreter. SO FOOLISH OF ME to think that they knew and understood the law which allows me equal access to health care.
This is not the first time Cedars-Sinai has humiliated and degraded me at the expense of my health, safety and comfort. It is not the first time I’ve been reduced to tears for the humiliation of having to beg for healthcare, one that our current administration states is a “right for all”….
If I do not make my voice heard with this incident it will not be the last.
My appointment to have a procedure done (oral surgery) on the next day will be done with risk due to the failure of Dr. Bluen’s office to obey the laws of equal access to those with disabilities.
I’m stuck, if I postpone the surgery, it will be another 4 weeks I’d have to wait for an opening which my tired and exhausted body can’t make.
As I sit here writing this, I am on the verge of vomiting the wee bit of soup I had for breakfast and my body is freezing but yet overheating. I can’t walk at all. My body is swollen from the immune system issues and the growing infection in my blood, my legs are so swollen and I have pain in my urinary tract infection. I am so uncomfortable…. Then I get a telephone call from Adel at Case Management. Only I didn’t know who it was from while she was calling and it wouldn’t have mattered because I am DEAF! Do you not get what deaf means? it means I do not answer my phone.
It’s 2021, who does not get “deaf”… or do text messages, emails and portal messages at Cedars. Why would they choose to phone me. I am deaf…. Duh!
Oh but that is not all, I see I have another message from the office manager at Dr. Bluen’s, called Jackie Robertson.
After my office spends about an hour to reach Adel, yes the people calling on my behalf are employees that work for me, which means again you spending my money and wasting my time for something that is a guarantee under the law (to provide equal access).
Then your office manager, Jackie decides to “go check the records to see if she has permission to talk with Spencer.”
Hellooooooooo… you did not have permission to discriminate against me based on my disability, or deny me health care or continue to subject me to further humiliation by phoning me when you know I can’t hear… but now you are going to further waste my employee’s time and my money by making her hold and wait to see if you have my permission to talk to her.
Well, you didn’t have my permission to break the law and reject me on a day I needed health care, but that did not stop you. So what else do you want? Really… you want a letter from me stating people you can talk to in the event you choose to not allow me equal access by contacting me directly?
Obviously IQ is not a requirement to work with Dr. Bluen… maybe you need to do some house cleaning. Maybe Dr. Bluen is equivalent. After all he did not help to figure out a pretty obvious problem the last time I saw him… that any health care provider should have been able to identify.
As I was basically begging them to still see me yesterday, I watch another man walk in, about my age, I see him go to the counter and say a few words back and forth and then sits and waits and gets in within minutes to see the doctor. MINUTES. No questions asked. Why am I not allowed that?
I guess I am not entitled to the same health care.
That man just because he can hear, got to see the doctor without any argument or delay while I was turned away, even after I showed the moronic excuse of a person that was turning me away the Uber receipt of $200+ to get there alone.
Moronic excuse of a person… too rough? Well, I just call it as I see it. What are their excuses for denying me coverage while I am in such critical condition?
NONE! It is one million percent inexcusable.