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 being denied health care regardless of the situation.
However, what happens when health care facilities become so big and powerful that they are above the law? I am going to share a number of situations that I experienced at my local hospital, starting with the most recent. With this, I will be sharing the real truth with photos, videos and shocking detail of how Cedars-Sinai treats me, just one non-verbal deaf person behind closed doors.
My health took a major turn for the worst in May 2018, after a freak accident where my ear drum was ruptured. Something that should have healed easily… but didn’t. The infection was in my mastoid and quickly spread, disabling 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 mold 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 labs, 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…I am currently staying an hour away. I still continue to use Cedars-Sinai as it is the only hospital I have ever been to and I have a history there.
My immigrant grandfather came from Beirut, Lebanon and his first job in America was at Cedars-Sinai. I helped fundraised millions of dollars for The Thalians Mental Health Clinic since I was a wee child. I donated so many countless hours working side by side with the leaders, Debbie Reynolds and Ruta Lee. Even 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 can injure your entire body. In order to get it under control, you need good physicians working on top of the multiple diseases.
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 randomly paired me with Dr. Stephanie Tran.
Dr. Tran was brilliant and patient and didn’t mind that I was deaf, 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… as if it was easy.
After 27 attempts to find a deaf-friendly PCP at Cedars, I accepted the fact that the issue was systematic and if I wanted to survive I needed to take action.
I managed to find a great primary care physician in San Diego. One that doesn’t mind I am deaf. I have to travel south 102 miles because not one physician (out of 27 attempts) at Cedars Sinai would treat me.
As I continue to battle my health along with being denied access to health care, it continues to spread due to being continually denied access to health care, simply because I can’t hear or speak.
I have systematic infections spreading through my body, yet currently identified 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 rejects the antibiotics orally. I need IV infusion in order to receive the medication.
The first surgery created 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. The last surgery, they used IV treatment and that was a disaster because my veins are not working properly.
On March 3, 2021, my office scheduled an appointment for me with Janet at Dr. Bluen’s office, asking for a sooner time, explaining I was in immediate need. Janet stated this was the soonest. She was 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.
I have become smarter due to the countless times I have waited weeks or months for my appointment, traveled by private driver hours simple to be turned away, treated poorly and denied services and interpreters without any notice.
So this time, I had another person in my office 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 texted my office while I was on my way asking them to make sure an interpreter was present. Just to be extra certain.
My office 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.
Since I have been unable to get a proper primary care doctor I still do not have the proper mobility aids that fit my needs and with covid restrictions, I am stuck in pain unable to sit.
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. They can contact their interpreting services department, which is basically useless but still funded.
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 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.
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 the office would not 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, while in tremendous pain… 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 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 procedure, 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 body. 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 can not answer my phone.
It’s 2021, who does not understand “deaf”… or do text messages, emails and portal messages at Cedars. Why would they choose to phone me?
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 my company, which means again Cedars is costing me more money and wasting time for something that is a guarantee under the law (to provide equal access).
Then their office manager, Jackie decides to “go check the records to see if she has permission to talk with Spencer.”
Yet, you did not have permission to turn me away for an appointment I waited three weeks to have… discriminate against me based on disability, 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.
Quite honestly, I didn’t have a plan for you to deny me my right to health care and to communicate with me. You have an obligation to accommodate me within all aspects of the business of health care. Why would I need to approve others to speak for me if you were doing your job and following the laws of our state and country?
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 begging them to still see me yesterday, I watch another man about my age, walk in, go to the counter and say a few words back and forth and then sits and gets called within minutes to see the doctor. MINUTES. No questions asked.
I guess I am not entitled to the same health care. Even though he is not in immediate need for health care, and I am. He is walking. My infections are so bad, I can no longer even walk.
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 and stated my severe condition and how I needed to see the doctor.
Moronic excuse of a person… too rough? Well, I just call it as I see it. What are their excuses for denying me healthcare while I am in such critical condition?
NONE! It is one million percent inexcusable.