Victorious

And so, you know, you told me yourself that like you came in with this recurrent pain, it's not usual for you. You know your body extremely well and knew something was wrong. And you know, you were sort of gaslit into thinking that you were dependent on opiates. And I want to like, like, how do you put that together? Because to me, that's, that's just so dangerous and worrisome. In fact, that's day. I started to ask myself if I had gone mad. If I had gone crazy. Because on the one hand, I was having outrageous pains. And I knew these were sicker's opinions. But the physician who saw me, he had seen me a few times before and said, maybe Victor, these are triggered by some form of opioid dependency. So I said to myself, maybe it's all. It could be because I do not know the science of these opioids and is their chemistry within the body. The thing is, the patient does not need to know the chemistry of medications within the body. That is the job for the physician. Welcome to Empathy Differentials, the podcast where we bridge the differences between patients and healthcare providers by sharing simple stories. All right, today I have a very special guest and currently interviewing a patient who I met in the hospital last week who just left an incredible impact on my spirit and also my clinical practice. And I wanted to just welcome you onto the show, Victor, and wanted to see how I could spread your amazing, inspiring voice to the rest of the world. So welcome. Thank you, thank you. And what I'm sure it is indeed, I've been following it. I've been meditating on it. And honestly, I have never encountered medical practitioner like you before. I have never encountered someone who is willing to even consider a discourse like this. I mean, the truth is the way the way in which healthcare is currently. And there are many, many issues that you had about up when you introduced this podcast, one of which, which I thought was also very interesting that you had mentioned, was the issue of violence within the medical system that is seen to be emerging and accelerating at a very, very rapid pace. I had been recently in a very, very rough journey, as you know, hospitalizations almost monthly for quite a long time. And I remember I was a day off when they started to pat people down. I remember the specific incidents that actually triggered this stuff. It was a young lady who would come into the ER with her mom. And her mom was having chest pains and shortness of breath. And I could tell the young lady is not versed to visiting hospital, but this is probably her first time bringing a loved one to the hospital. And as they're checking her in, as they're putting them, they've respond on her mom's arm. The lady explained, I'm sorry about the wait time, it seems to be about an hour and a half. And the young lady quickly panics. She freaks out. She does not know whether her mom can withstand this chest pain for an hour and a half and the shortness of breath and so forth. And this panic continues to escalate. And nobody is thinking of how to just, in a very gentle compassionate voice, calm her down. And because this compassionate voice is not there, this escalation continues to increase until it becomes quite chaotic in the ER and hence they put her out. And they had taken the mom to the emergency vehicle to another hospital. It was a very big mess. And a last pat down started that very night. And I could understand how this situation could escalate to that very quickly. And from my perspective, as I was sitting there, it wasn't a surprise. That same night, I watched as a security officer, I was having to assure a person out for a lot of cruel behaviors. And this person was not even a patient, but had taken upon herself to sleep on her, on the patient's bed. Her boyfriend, slightly deep, was a patient. And so she had decided to sleep right next to him on that specific tiny bed. And they explained to her, "Listen, you cannot do this." Her boyfriend was on oxygen and all these things. She had then went to the bathroom and decided to take a smoke. And at this point, they said, "Listen, you have to leave." We have oxygen and all sorts of things that are not conducive to you doing this. You have to go right now. And the security officer has slightly turned her back on her. I called the security officer, the lady throws the punch. She punches the security officer on her back and the security officer is like, "Listen, I have to now cuff you. You know, I cannot let you just keep swinging at me. This is not going to happen." And so the night's progressed. You see a lot when you're in the emergency room, a lot. Yeah. And you observe like more than anybody else that I have seen, like as a patient, you just so quietly observe and take it in. And I'm wondering like in you seeing these scenes, what do you think is the root of the discord? So on the one hand, I'll say the issue is on the one hand, it is impossible for patients to understand these things. At least, I wouldn't say impossible, but I would say it is very difficult for patients to just sit there and understand all the ongoing of a hospital. For me, when I first started going to the hospital, when I first moved back to DC from Louisville, Kentucky, I actually had an idea that sometimes the nurses are just sitting on their computer playing solitaire. And the truth is, it is very far from that. The nurses have to chart a lot of information. The doctors themselves have to write a lot of things down. So the truth is, it might seem that they're moving extremely at a slow pace, but it is for the patients' benefits that they do this. And alas, me before I got used to observing these, I was quite impatient because I am in these outrageous thresholds of pain, and nobody stops by to say, "Hey, are you okay? Is there any technique in Louis?" The first time this happened that it started to change my perspective was actually when I was hospitalized in the rich part of time, town, if you will. Then I realized, it isn't so much that these modes of care don't exist, is that the economics also of the hospital matter. Here's a good example. I was, the hospitalization was in Fairfax, Virginia, which if you're from the DC area, you're from the DC Melland and Virginia area, you know Fairfax is basically where area billionaires live. And so here I was in a Fairfax hospital and I am sitting there in pain and somebody just stops by and brings me blankets and heat formers and things like that and I'm like, "How do they manage to just stop and do this?" It was confused because in all my time of being hospitalized in DC, I was most times hospitalized in one of the poorest hospitals. So because of that, the implication was they did not have the resources to do these things. And because the hospital did not have the resources, they did not also manage to be able to do this. They couldn't afford the staff. One tech in ER, one extra tech can move mountains. But alas, if you are in a very, very impoverished hospital, they can't afford that tech. They want budget for that. And this might seem big and necessary, but it's matters in the long run because that person can provide various sorts of care. That person can ask individuals what is wrong. And in a world where people used to wait for 15 hours in the emergency room, this person can actually cause who's having less air heart attack in the ER to be seen more immediately or to change course of that's events. This is a literal thing that has been epidemic and it is why now these violent episodes are beginning to emerge. And you know, when you look at it from the patient lens, I just sort of wonder like you're seeing all these things around you and you see how even with your journey, it took so many visits for people to get your diagnosis. And I'm just trying to understand like how do you have the patients and wanted to understand a little bit more about how this has been for you. Honestly, when I was younger, my parents always tried, were always there to calm me down. When pain was in a very, very heightened state and where I could no longer hold back my emotions. But as an adult, you don't always have that. So I remember a specific incident at a hospital here in DC, and I was in a lot of pain. I had been waiting for God knows how long. And the nurse was finally taking care of me. She had, she was pushing the bed that I was on. At the same exact time she was carrying medication in her other hand. And in my, I wasn't seeing what she was doing. All I was seeing at that moment was the pain that I was in and I snapped and I said things were, it was very hard. I asked, I said, is it okay that you guys just can be so nonchalant while another is suffering to these extents. I mean, if I explained that it feels like shards of glass that are moving about your body and the whole rest of the wall is silent to it, is it so easy to be indifferent? And I looked at her eyes at that moment and I had seen how hard broken she was instantly because she became even more hard broken that she could not know more. And at that point, it touched me very deeply. I said, no, Victor, you cannot continue this route. It's true, you're in pain, but there must be a way to overcome this in a higher level. Something about that exchange just affected me to say I have to grow even further. If I'm going to continue this battle with this chronic illness, if I'm going to continue this for more days in my life, I have to grow both as a patient and as an individual to the level whereby I can better navigate it because I realized that that second that's, I was not strong enough inside myself to deal with it. And I needed more strength for me. And it wasn't even now that second about that nurse anymore, I realized I need something for me because it's not just going to be for me. It will also affect those around me. And so I started on the journey. For me, I had decided, I guess, on that day that I'm going to be a different person. I'm going to be a sunshine that even when the doctors come into my room, no matter the level of pain, they'll feel as if there's a new heat in the room. And, you know, I apologize to that lady and she had medicated me and the pain had gone down and I said, truly, I did not understand what she was doing for me. And because here she was using two arms, one to push the bed that I was in, the other to carry my medications and should one thing slip, the medications would have fallen. And should another slip at the bed that she was trying to hold with such, you know, carefulness would, you know, go away. So she's trying to navigate into this very tiny room. And I observed the room at its nature and I said, it's not small because it's small, it's small also because the investment placed in it was small by people deciding it this way. Right. You know, and by people deciding it this way, they weakened the care. And so I'm looking at this nurse now having to compensate for leaders who had weakened the care. And after that day, I developed also a very harsh attitude towards leaders of hospitals. Be honest, I don't think that will change. I think leaders of hospitals can be very callous and irresponsible. And I'm not going to hold back on that aspect of things. Leaders of hospitals, they don't know the number of lives that they affect. I don't think they know. They can't know. But I can say they don't seem to have that knowledge of the experience of patients, definitely the experience of doctors work under them. Because the experience of doctors carries a certain sometimes, sometimes you could look at a doctor and you could see the trauma inside his eyes. While he's caring for the patient, they're also caring other burdens. A couple of months ago, I had a doctor who was caring for me, but at home, his mother was in hospice for stage 4 cancer. Now, how does this doctor manage to then compartmentalize me, give his best attention to me, and just go home to a mother who is in a lot of pain and time. I can say that is not an easy burden to carry. Because I can say it with complete authority in fact, that is not an easy burden because I carried it. And when I did, every single week that my mother was undergoing this harsh reality, I was spending one week in the hospital, and one week with my mom, one week in the hospital, and one week in my mom. Plus, I also had an undiagnosed matter. That was the same thing. Right. Right. And that's the thing, like we, as we think about doctors a lot of times, patients think that we leave this pristine life outside of the hospital. Yes, yes. And we are humans too. And I think sometimes that carries over, you know, the compartmentalization, sometimes that carries over. And hearing some of your experiences first, maybe I think you have been the best at sort of describing what it feels like to have sickle cell disease, but just for folks who are listening, you know, can you, can you just describe how even just the last month has been with these hospitalizations? And, and that way also other physicians can, can understand this is not, this is not, you know, just a sprinkle of pain. This is much more. It's interesting. You say that this morning, my nurse came to give me medicine for pain. And I was saying that yesterday when she came in, she found me in tears because of the pain. And it's not normal for nurses to find me actually crying. It's not normal, even for, for nurses, when I'm in the hospital to encounter me crying. So when they do there, now they know this is extremely bad. Because if you ask the nurse, hey, what's up with Victor? And you know Victor, they might easily say, if you know Victor, you know that one thing we are not used to him is him being in tears. Like, it's like the sun is appearing for us. It is not normal for Victor to cry period. And yet she's, this nurse found me crying twice, including the doctor actually. And, and this is, this is a rare issue because I am very good at navigating pain. That being said, the system of sick or cell when your body is sickling, it feels like shards of glass moving about your body because the cells, the red blood cells in your body have changed shape. Now, when they change shape like this, they, they, two things happen. One, because their shape is like a crescent moon or the, the clippings of your nail, if you will, because they are like triangular almost, uh, and it's cutting inside you. So not only are you blood cells cutting at your organs and your blood blood vessels and other, even including your bones, because it's because sometimes in your bones, it also is not sucking in oxygen that you're breathing. And when it's not taking in oxygen, it means your bones and your organs are also not receiving oxygen, which is extremely important because if let's say your brain is not receiving oxygen, this can cause you a brain to decline and it's dying, uh, in, in essence. When, when your bones are not receiving, uh, oxygen, they literally collapse a little on other organs, you know, like your heart says. So sick or cell can cause all sorts of complications. So you are dealing with this very, very painful ordeal, but also you are physiological organs also at stake and they can easily collapse and break. And in all of this, if you don't stay calm, say for example, you freak out and you're hyperventilating, you're wondering when your pain medication will come. Well, the more you're breathing fast, the more you are losing oxygen and the more you losing oxygen, the more you are damaging your organs, the more you're breathing fast, the more you're causing these shards of glass to move about your lungs and thus they're cutting your lungs and thus your lungs can easily collapse. And I have known people to which it just happened to have known people who have had a stroke such ages as young as 12. So it's not an easy thing to undergo and hence if you can be as patient as humanly possible with yourself, even then it might not be enough. So your care providers and specifically the care providers who actually can show you genuine care matters more sometimes than the care providers who have resources. Because the ones who show you genuine care at least are able to comfort you in your time of hardship. The one who have resources might not. They'll give a good example. I had one who had resources in working in a sickle cell clinic and I would email her whenever I would have extreme audios of crisis. And it became it became clear that she was actually rather offended by the emails. And I was actually cut off guard by it because I'm like listen I only see you once a month where we talk less than people spend time in churches and other activities. And so we talk for maybe at best 30 minutes and I have to deal with all these implications. And while I'm seeing you once a month I'm still in the hospital every single month. And I don't know what is causing me to be in the hospital every single month. Most sicklers don't always go to the hospital every single month. They could sometimes we could sometimes go even for years without seeing a doctor. But yet when this is happening we need to know hey why this is happening. And so when a physician says listen you've seen me two weeks ago wait until next month stop emailing me. It can be more painful than if they said listen Victor you know I do not know what to do. At least I do not know what to do is honest. When they tell you stop emailing me because you know it is unnecessary. First and foremost remember this is a professional environment whereby we interact via phones and emails but phones are not conducive to a doctor's hospital environment. At least I would presume the email system will be a little bit better because they could get to it whenever they do. They're not forced to have to respond to it spontaneously. But she called me on my cell phone and you know told me this and which is ironic because most individuals who have cared for me had my cell phone number and I had theirs. But I never had this event occur. Which was you know so I said to myself the guy who's in charge of this place of this clinic he also gave me his cell phone. Now him if I call that three in the morning he would be more than happy to talk to the doctor I was seeing me at the emergency room. He will not hesitate to explain anything that is needed because he sees me as that patient. And he knows I will not call him unless it is absolutely necessary. And when you go through these pains you don't just call your doctor or text them whenever you want. You you you you revere that relationship as something special because you know this person is is not just a friend of yours is a very you know caring individual so you you respect that and you keep boundaries you will just not text them at three in the morning or email them. That's a last I said to myself Victor yes no emailing the one who cares you emailed it in fact the one who not. And the last I start going to the clinic. Yeah and that see that balance of that that trust and that relationship is something that we're losing. Yes. And and like you're absolutely right in that so many so many folks who have resources and titles and do a lot less patient facing work and have those relationships we sort of have have struggles with these. Yes. And I think one thing that you mentioned earlier that we sometimes become rather immune or you you said the word nonchalot which I think is really pregnant here is you know like we see suffering all the time and then it becomes something that lives at a distance from me right. And so you know you told me yourself that like you came in with this recurrent pain it's not usual for you you know your body extremely well and knew something was wrong and you know you were sort of gaslit into thinking that you were dependent on opiates and I want to like like how do you put that together because to me that's that's just so dangerous and worrisome. In fact that's day I started to ask myself if I had gone mad if I had gone crazy because on the one hand I was having outrageous pains and I knew these were sicker's opinions but yet the physician who saw me he had seen me a few times before and said maybe Victor these are triggered by some form of opioid dependency. So I said to myself maybe it's all it could be because I do not know the science of these opioids and is their chemistry within the body. The thing is the patient does not need to know the chemistry of medications within the body. That is the job for the physician that is the job for the pharmacist and the care specialist. Now what happens here is that and I understand why sometimes ignoring certain facets of things in the hospital matters. I will give this example. A person might be crying and might have been crying let's say for a couple of hours but the nurse has stopped by to see this individual let's say three times and the nurse knows this individual is has a bit of unmanage pains but they have already been admitted to the hospital they're just waiting on the bed and once they are they could then be treated better. So at this point it is not in the nurse's hands to provide further medication and even though they can call the admitting doctor and explain the situation it is still outside of the realm of what she can control. So she does what she can she explains to the patient what she has done and now every time she passes by the individual though they are still crying she now in smaller periodics stops to actually ask hey is there anything else I can do. The reason is she still has to carry blood she still has to carry urine she still has to do all these other things. So she can't keep on stopping every 10 minutes to check on this one individual so it is important now to ignore this cry. So that I do understand and I do excuse when both the patient the nurse or the doctor have to do that at the same exact time. When the doctor is interacting with the patients and but when it is now frequented at one point Victor is in in every month but then Victor is a hospital stays now ex accelerate to let's say two weeks and then it's like a month again now it is now difficult for him to picture and of course he's not they're not asking hey what else could be causing this right and this is important because it's okay to not know again it is completely okay in fact I would even say the greatest praise I ever received personally I remember in college I once wrote about the previous paper to my professor that I had said some things that I realized that I was wrong on that professor took me to dinner and said Victor as an intellectual the best thing you can be able to do is admit that you are wrong. When I started dealing with sickle cell like this I became appreciative of doctors who just told me Victor we don't know what to do here because it's very rare for scientists and doctors are scientists that is should be deeply understood that physicians nurses and you know medical practitioners function in a scientific world and so with them not saying it telling you hey we don't know how to engage this one we're still looking into further researching and so forth that is okay it is better they tell you that or they presume and tell you information that is wrong and this is also more humbling if they tell you hey we thought it was this but it turns out to be this it's better they tell you that hey honestly we what we thought is not accurate or to even have a position who apologizes you know in this world for a person to apologize that is a very rare gift it is a gift that is who's value cannot be overstated and so for me I came I I I'm having dealt with all these pains I would have a nurse will come and say Victor I'm sorry I'm late like you don't understand I am just glad that you made it because the truth is you have at least five other people with all sorts of complex things some would just call you back for Coca-Cola and some would just call you for a cup of ice and then you have one who needs pain pain medicine and you don't know which is calling you for which at certain intervals of time or at least when you are dealing with this when you're taking care of this you are giving them their antibiotics we're giving them this we're giving them their insolence and then afterwards you ask them hey can I do anything for you and you're hoping they would not say anything else and then they say hey could you get me some ice even though their time is limited and should be considered and as patient we don't always know to consider this but you know because they asked and they all say hey go get me a Coca-Cola. Right because it's it's meant with you know it was genuine and can I get you some yes and you're going to take it of course and I think what I'm gathering from this is that you know it's okay you ended up having just pretty severe and atypical infection that was the trigger to your multiple hospitalization yes and I think this is a lesson to all of us as providers that like you cannot anchor on just oh it's just random signal cell pain and prices we always have to think about the you know what is it due to what might have happened to try this especially if somebody is telling us you know hey this is different yes hey this is this is not me this is not me this is not Victor from Victor to go to the hospital three years straights four years straights every single month are you kidding me you know because this is not an individual who normally would just collapse like this their body mechanics this don't seem to function in fact even when they're in pain they seem very vibrant and yet somehow there's something that is causing this reality to continue to occur so this means we need to deal with it in a more complex way at the same time the patient should not be expected to articulate that and so how does that divide get bridged then that's an interesting one I think going forward at least once a patient has experienced this now they can articulate it but now before they understand this I think it is now becoming more and more important for doctors and especially when a pattern is becoming established a pattern where this individual seems not the type to need this much hospital visits then very deep examination of these problems should take place one of the ironies is I have been hospitalized both here in uh Washington and whereby they treated me for pneumonia's you know which is which is which makes sense now that I am that I look at the implication of this the bigger picture yeah but in the course of treating the pneumonia's one of the questions that started arising actually at Washington and I'm sure this would have probably ended up occurring at Washington eventually which was why is he having so many constant symptoms of pneumonia like events you see because at this point would have been in a fourth pneumonia like event in the course of the last five months to which I am very sure this would have you know triggered that deep examination because the last time I was there that started to be asked so it's a this pneumonia thing it's not so much that we are concerned about the pneumonia we are concerned about your temperatures and I was having outrageous fevers I would stay at 105 for like several days like a whole week straight and my doctor was like really really worried like there's no way this is that he sent to me he says if you are back here again I don't think I will let you go home until I figured out what is going on with you yeah your doctors can only know what they can with the medicines that they have scientifically created um and those chemicals can do whatever interactions they can in your body but it also also requires your body to handle them in such a way that you are able to not come back and that bridge is tricky tricky tricky to divide because it requires especially from the physician to be able to be very very careful and it is not easy because like we said the physician has other things at home the physician has other matters to worry about the physician too is a human being and unfortunately the medical system the care system at this point is too monetized and because now we've created a value to care care of this level is costs 10 dollars but of that level cost 15 now because of that anyone would want the 15 dollar one and not that you know 10 dollar one because everybody takes the 15 dollar care everybody will go through the most high paying care possible which then is like the place where the billionaire gets the care because that one at least is a hundred dollar care a thousand dollar care 10 thousand dollar care right and since we are there the ones worth the 10 dollar care it means they do not always get this much attention and the doctor sees a bench of the 10 dollar care because everybody can only afford that and this also has implications the doctor does not have as much time to spend on all the 10 dollar care individuals so this is a this is a very very dark point and you would think this lesson would have been middle-aged during the pandemic right when we didn't have anything and we constantly were asking these questions and had no resources and people would literally die people were literally dying because one of the other tragedies of the pandemic is that lack of knowledge caused also more death and the death that it caused is two those very caregivers their doctors who find themselves on the hospital bed among other doctors who are less empathetic and that is a very bad world to create because if the doctor is on the hospital bed the best thing she would hope for or he would hope for is on the other doctor will understand hey I'm treating my brother or sister therefore let me be as careful with them as I am with everyone else but if that is lost in this maze we create a very very problematic reality so and that's kind of where we are today it really traumatic place and that's why you know we're seeing continuation of folks moving you know the healthcare space yes I just think that empathy really thrives on bidirectionality and there needs to be sort of just like you're saying this readjustment of understanding between us two yes as people and and your point about uncertainty I think we as healthcare providers have uncertainty and patients I mean you just told me you know is this is this the answer is this it what is my long term looking like you face a lot of that uncertainty yes on the daily and being open and vulnerable to say that you know the other day I think we talked and I was like this is a 18 month course of antibiotics and it's going to be sort of a roller coaster and we're not going to know what we're dealing with there could be good days and bad days because I don't know yes I'm not sure imagine the fear of what a patient would have if they were told you should be in the hospital for two more months and that that patient has a child at home who depends on that individual that the child depends on that patient in the hospital for things like food grocery things like that not just that just regular you know social presence yeah yeah like so as a dad you your child just wants to see you and it's comforting for them to see you if you might not even be doing anything at all sometimes I would just be sitting there like reading a book and my daughter would just come and just lay next to me and sometimes I'll tease her I said do I look like a bed or a couch but she'll continue to lie there and sometimes even mother yes you do you you are very comfortable in fact but it is important that that that exists it is better that that exists than we lose things like this and just as it exists for me it also exists for my doctors you know they also have family members that you know I want to hug them and and we all need that because we are human beings and the reason we we do this for each other is so that it's not just because I care for my child therefore the other child does not matter no no no no if we go about it that way then if your child is in trouble and that parent says no no no that is not mine then you know who is there to rescue yours because you are not always there to rescue you are on you are not always there to protect yourself we always need each other we need the doctor needs another doctor so much as the patient needs the doctor it's not in silos it's not separated you know and that is why I say that leaders of these institutions it is even they can be affected one of the things about the pandemic's lessons is that leaders big-time powerful people will cut into hospitals and found themselves in very vulnerable circumstances and some even died and these were powerful powerful and very rich people so it wasn't the issue of money that caused them to die it was the issue of them receiving a level of care and the level of treatments that the absolute aspects of science could provide and the best aspects of you know however this should have been as applicable to them as it is to anybody else right and that's the thing all right that's that's an important lesson that we still have to learn and before we go I want to ask you two more questions one has been burning in me since the first day we met you identify with the word sickler yeah and I I have a lot of like controversies surrounding that word yeah because a lot of people don't want to be identified by their condition and some people really own that word actually I would say most sickle cell patients the the better way to identify sickle cell patients and I will say is warriors most sickle cell patients see themselves as sickle cell warriors so and most sickle cell patients when they talk to each other they call each other warriors no no I do that for for for many reasons because to overcome this pain or nothing but a warrior attitude was a vice and most parents of sickle cell children call their children warriors so while I this I use the word sickler I I'm actually misusing it because if you ask me how do I truly feel about my identity as a sickle cell patient I'll say that I am not just a sickle cell warrior no that is not even the level that describes me I'll say that I am victor I am victorious so the level of victory that I have not just in sickle cell but I see my victory is like overwhelming in every respect that I it's just not so limited that it is complete and other victory and I seek that in not only in terms of medical issues that in terms of life issues and so forth so for me having the victorious name is nothing short but the best right it is why well if you ask sickle cell people hey you guys identify as sickle cell warriors is that a part of the identity they almost definitely say yes I'm gonna start asking that of my patients I'm gonna be like are you a sickle cell warrior yes that's amazing I didn't you know I've been treating this condition for such a long time I had never known that it is it is part of the identity that we carry in fact it is one of the most important aspects of our identity and it is one that we don't actually articulate enough yeah our ability to overcome pain I don't think most people understand the level of threshold the level of calm the level of you know just perseverance that is required for these things right even when a sickle cell patient is irate for for various reasons relating to it but when they come down you can also be shacked at the level of calm and it probably took a lot to get to that irate state of discomfort right bingo yeah because essentially if you are if you are if you are if your bones feel like there are shards of glass moving from within I mean with the irate and you can last now but I'm I guarantee you when you were miserable it was not so easy you were not you were yeah it was not so simple and I think that's what brings you know me to the final question it's you know if you had maybe two or three really important points that you want to tell providers about what they need to know for better patient care and it can be related to sickle cell disease or not what are the what are just you know the the lessons that you would impart on us as your healthcare team I mean I would say this that always remember the patient that patient is also kind of like you when you see that patient imagine seeing yourself in that mirror because the truth is the reality that patient into us let's say the physical pain and the emotional hardships that go with it the truth is they might not know all these pieces but it is extremely important after you have taken time to listen to them and sometimes they might have a lot to say about what's happening to them but after you have gathered as many of the pieces as possible try to keep those pieces together and if they come to you again add up to those pictures especially if the problem is the same to continue puzzling over it treated like a Rubik's cube where you are like trying to put the pieces together even if you don't solve it today you continue to flip it around you put it down you flip it around later again you put it down this will help you not just with this particular patient but also within yourself when you are dealing with issues that you are facing you will continue to also puzzle them and you put them down you can't deal with all of one's problem even your own problem in one day there's that saying how do you eat an elephant it's one piece at a time you don't swallow the whole thing yeah same thing with this issue because now I have undergone a lot a lot of pain and they've been battles that I wish I had not had to do with some some battles were even so outrageous that I just they just left me in tears one for example some some of my least favorite at the administrative ones imagine you go a doctor fills a prescription for you then you take it to the pharmacy they start working on it and then they tell you we need prior authorization you call the doctor's office back they say okay we'll send you call them the next day they say they sent you call the insurance they say there's an error you could be stuck in that loop for either yes and I've been stuck in those loops for weeks without having the medicines and then the pains implode and I don't want to go to the hospital over such a little useless thing but yet it puts me there and when I'm there I'm even more depressed this is this is the nature of the world that we deal with and it is very frustrating to deal with our administrative ones even for our doctors it is frustrating I agree 100% I agree and so we just have to be patient with each other we can't just go and say listen I'm gonna go slap every single one in these pharmaceutical departments I've been tempted but I can't and in fact at that root finger crisis in itself so I just say you know what I understand you guys have to do this because you don't you know keep these protocols then something could happen yet the impact is really high on you mistakes are very high dingo and so we always a crisis away from a stroke at the same time or even death dingo and I think that's that's something that when we see all the more reasons to be a warrior too the friend of mine who lost her eyes due to the sickle cell battles she she left just me as a victor you are not just a warrior you are warrior with very very special abilities you know you you you calm down when anyone else will sickle cell is not calm I would agree I would agree there is something magical yeah so we and we need that and we it is we will create that magic you know it is we can't wait for someone else to come and do that magic for us we are the ones declaring it we are the ones speaking it we are the ones impacting someone else you could easily just say somebody have a good day and they they could light up sometimes it's just the most simple gentle things gosh I just I am still going to be processing this conversation for such a long time because you just have even in just one week have taught me so much about myself and about patients and you as well I don't think patients meet doctors like you doctor that I think you are the patient who like keeps us curious keeps us engaged keeps us you know wanting to do better and you would just have so much wisdom to provide and that wisdom needs to be out there and so I just deeply respect and admire your perspective and for you to be able to share I would share with you any day like speaking with you is always a wonder too I find great comfort in the in the very idea that there's physicians there who actually want to know how patients feel how patients think how how patients are affected by certain things the norms of the hospitals the norms of you know the care system you know and who are actually interested so I deeply deeply I'm always happy to talk to you because it's it warms my heart it's always warms my heart it's ironic before you came I was aching but talking to you I completely forget about those things because and and this is the most awesome part about caregiving is that sometimes you don't need to use medicine sometimes it can just be the raw interaction with the patient that creates comfort in itself it's a great thing and I think it is going to cause tremors in the healthcare world well I hope that this is just the beginning yes and I'll be following up with you but you're just a reminder that every conversation has the power to heal yes thank you you