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how i survived survival mode mar
Patient Stories, Podcast

How I Survived “Survival Mode:” Marriage, Faith & Near Death Experiences with Autoimmune Vasculitis Warrior Hay

January 17, 2023
70 min read
1 comment
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Summary:

Trigger warning: This episode includes discussions of near-death experiences, medical trauma and decisions about quality of life versus prolonging life, which may be a sensitive topic for those triggered by the topic of ending life.  If you are having a mental health crisis or are struggling with suicidal thoughts, in the US you may call “988” for the Suicide and Crisis Lifeline which is staffed 24 hours a day.

Hay shares raw wisdom from her autoimmune vasculitis journey, from days of living breath to breath in survival mode to learning to live life to its fullest within constraints.

Hay and Cheryl urge fellow chronic illness warriors to resist trying to fit their experience into a tidy narrative and instead ride the waves of uncertainty.  While extremely challenging, Hay notes that “deep calls unto deep”, allowing shared humanity and connections based on what unites us all.

Video of Discussion

Episode at a glance:

  • Education and work: Hay earned her PharmD (Pharmacy Doctorate) in 2011, but began experiencing chronic illnesses shortly after. She has learned to understand that your value is not based on your productivity.
  • Relationships: Symptoms like fall risk, limitations on leaving the house, and being in “survival mode” have been trying on her marriage, but her husband never gave up.
  • Diagnosis saga: living with Behcet’s vasculitis, common variable immune deficiency, Microscopic colitis, and respiratory failure, along with a variety of complications
  • Treatment journey: Hay explains how she uses total parenteral nutrition (TPN, aka “vein food”) due to her GI tract not absorbing and has had a lot of trial and error with medications over the years, some even working against each other. She eventually found a promising mix of medications that has recently been helping her improve. She has been working with a team of seven specialists who collaborate on her treatment, especially from a palliative care perspective. 
  • Coping and advice: Hay shares the importance of art, faith, clear communication, and having boundaries. She explores how she tries to live life to the fullest within constraints. After having to deal with end of life conservations, she notes that “The way you hold people’s stories has to be infinitely more gentle than you thought”. Having been a writer and interning for a literary agent, she is used to stories being explained in 45-65 minutes but life with chronic illness feels like “you’re on a blindfolded roller coaster you’ve never seen before”. Cheryl and Hay discuss the benefits of resisting the urge to force your experience into a tidy narrative. 
  • Surviving SURVIVAL MODE: Hay shares how some days have been just living breath to breath and opens up how she’s allowed herself to grieve and learned to “riding the waves of uncertainty.” She shares what it’s like to have conversations about quality of life vs prolonging life. She explains the importance of connecting to others and exploring our shared humanity, “because deep calls unto deep” – what is happening, why am i here, what connects us, and understanding you’re not alone. She also shares how religion and faith have served an important purpose in her life.

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsor

Rheum to THRIVE, an empowerment program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Learn more here! 

Speaker Bios:

Hay Farris

I was diagnosed with Behçet’s disease at age 26 after being unable to work for a year as a pharmacist due to many symptoms, but also the pain and discomfort that was in my knees and feet limited my mobility so much I was initially sent to a rheumatologist and treated as an undiagnosed RA patient. Even after my diagnosis (since it was 2013), my doctors at the time initially approached my treatment as they would’ve an RA patient. In my 10 years of disabling illness now, my arthritis in my knees, hips, and feet has impacted my mobility and caused many issues over the years.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

  • Links to things mentioned in episode or additional listening

Where to follow Hay:

Full Episode Transcript:

Cheryl:  

Hi, I’m so excited to have Hay here. I would love for you to just let the audience know just a very quick introduction, like where do you live? And what is your relationship to autoimmune disease?

Hayley:  

Okay. Hi, Cheryl. Thank you for having me. It’s so nice to meet you in virtual real life. 

Cheryl:

Yes. 

Hayley: 

We met at a conference, the Autoimmune Community Summit. That was great. Now, my name is Hayley Farris, but I go by Hay, and I’ve always gone by Hay. So, that’s just the first half of my name. But it’s Hay Farris, and I live in Birmingham, Alabama. And I’m 35.

Cheryl:  

Awesome. Yeah. And then, so what chronic illness do you — or illnesses, because we know they like to travel together — do you have?

Hayley:  

Yeah. Oh, they love being together. So, I have Behcet’s vasculitis. And vasculitis is the thing that if you’re not familiar with it, that was, you know, Ashton Kutcher just recently came out and was like, “I couldn’t walk very well for a year. I lost all these abilities. I had to relearn all these things,” and then, he said it was due to a form of vasculitis. So, I also have a rare form of vasculitis, and it has taken me down for the past 10 years. But it came with some extra friends and some extra challenges. And that was common variable immunodeficiency. And that’s just, it makes it complex to treat an autoimmune when you also have an immune deficiency. So, there’s a balance you always have to walk there. And then, just this year, we found one of the worst manifestations of my vasculitis in microscopic colitis, because I’ve been on TPN before where I did not eat.

Cheryl:  

Oh, yes, sorry — can you tell people what TPN stands for? 

Hayley:  

Okay, so TPN is total parenteral nutrition. And I’m a PharmD, a pharmacist; I graduated in 2011. But then, I got sick in 2012. So, I became very much a pharmacist towards these type of conditions, and mainly mine. But TPN is basically vein food. It just means that your GI tract is no longer able to absorb or take in any kind of nutrition for your body. And you have to — you can’t even do like a J-tube or something like that because the GI tract itself is not absorbing properly. So, you have to skip it all together and then go straight to your veins.

Cheryl:  

Okay. Yeah, yes, I didn’t mean to — so, that —

Hayley:

Yes, TPN.

Cheryl:

And then you had microscopic colitis.

Hayley:  

Yes. And microscopic colitis is one of the more difficult complications of my vasculitis. But I did, I do have complications in every area. For example, I’m wearing my oxygen cannula right now, because I am in chronic respiratory failure. I have my fluids running right now through a Hickman line, which is a central IV line in my chest. And I’m running those right now so that I can have the hydration to sit up and talk right now.

Cheryl:  

And well, I’m first of all, just I’m so grateful you’re here because like you said, you got diagnosed 10 years ago. Couldn’t decide between saying 2012 and 10 years ago, it started to come out as 20 years ago. But so, you’ve, you know, you’ve been through a lot and on this podcast, I have mostly had people with like inflammatory forms of arthritis or autoimmune forms of arthritis. So, before we go more into your personal story, because I do want — that’s like the main, like, you know, just this is what people love hearing, telling their stories. And, you know, feeling less alone and everything. But just because it’s not a condition that I’ve really covered, like vasculitis, could you explain like, what are some of the symptoms that you experienced? And what are some of the common symptoms of vasculitis? Or is it — Behcet’s?

Hayley:  

Beh-chet’s. Well, it’s beh-chet’s, or bay-chet’s, or bush-chet’s. It’s just the whole, it kind of just depends. And I’m from Birmingham, Alabama. So, I guarantee you how I say it, it could be the accent.

Cheryl:  

No, it’s okay. It’s okay. Yeah, I’ll put the notes to these conditions in the show notes so people can look them up if they want to learn that too.

Hayley:  

That would be super helpful. 

Cheryl:

Yeah, yeah.

Hayler:

So, vasculitis, just in general, there — it’s just an inflammation of the blood vessels. And so, it’s very similar. It causes an arthritis in me, it causes all kinds of different, wherever you find — that this is kind of a weird way to generalize it — but wherever you find a blood vessel in your body, you can have a swollen, complicated vessel there. And that is my manifestation of vasculitis, is a lot of difficulty in all different size of blood vessels of my body, from clots, to bleeds, from fatigue, to brain fog, to the pulmonary embolism I had, brain bleed, lots of GI problems where it’s malnutrition so severe that I can no longer eat and I lost my ability to walk, I couldn’t speak very well. There are still pieces of my journey, because I’m still sick, but there are still pieces of my journey that I am not even fully aware of, because those around me experienced them. And I was experiencing my own version of survival. And so, I’m still learning about some pieces. But yeah, I guess, for me, I feel like I have an — I have grabbed some abilities back and I’m living life now a little bit more than I have in the past. But then people still look at me and they say, “Well, you’re wearing an oxygen cannula. And you’ve got fluids running on into your chest, IV fluids.” And I’m required to have those twice today, if not more, and I can’t leave my house because of the immunodeficiency, especially now with COVID. My husband and I joke, we were living the COVID life like, seven years before COVID even started. And so, it’s kind of that. It may seem small, like a very small life to many people. But it’s such a great point to be at, compared to where I have been that it’s weird, it’s weird for people to understand and fully grasp. But yeah, anything from bruises to brain bleeds.

Cheryl:  

Well, yeah. Oh, my gosh, no. And it’s so true. Like, you know, your blood vessels are like delivering oxygen and nutrients all over your body. So, um, so yeah, the fact that they — they’re a little bit important. But yeah, yeah. And I just, you know, I really resonate with what you’re saying about, you know, if you have a chronic illness, no matter how severe it is, there’s always this tension between wanting to make your life about controlling your symptoms. And obviously, that’s really important when you’re in survival mode. But there’s also kind of this, like, I don’t believe in Maslow’s hierarchy completely, right. Because Maslow’s hierarchy is like, we don’t, he was like, we start with needing the basic things like food and shelter and safety, and then we, only when those are perfectly met — and I think you’d almost put health in there — then you can go to these higher like abstract love and —

Hayley:

Oh, my God.

Cheryl:

Yeah, what do you think about that?

Hayley:  

That’s a very great — that it’s such a good question. Because here’s how I think, that applies extremely differently for chronic illness patients. Or for in general, patients with a disease or a prolonged illness. There is no — you can get stuck trying to fit yourself into a box, or a triangle, or a hierarchy that seems like it should be the way to go. And the truth of the matter is your journey is your journey. And while there will be pieces that you can share and find in common with others, which is invaluable, sometimes you’ll also be kind of like how I was for a while where no one had ever met anyone as severe as me who was still here. And so, my doctors included. I’ve had a nursing home stay when I was 31 years old, and it was after talks of palliative care. So, it’s a very interesting thing to try to live through, surviving, when you know that the hierarchy of needs is necessary and true. But how do you find life within that basic level of still striving for your main, you know, food, shelter? How do you find art, and like faith, and all of these other things, when you are still in a stuck space? I call it a ditch, you just are stuck in the ditch, over and over, and you’re trying to climb out of the ditch. But you keep going through that same cycle and that’s where all your energy gets expended. And the cycle of survival doesn’t often — and the way that the world perceives productivity, this cycle of survival does not equate and mix up, I mean, in a line up with a valuable life, in like a productivity definition of it. And so, with Maslow’s hierarchy of needs, I agree in places too. But I also say we need a chronic illness hierarchy of needs and living, because it does alter everything about life. Everything about life. The different pattern of life with different concerns. And if you’ve got your health, praise Jesus.

Cheryl:  

Don’t take it for granted. I know. It really is.

Hayley:

Don’t take it for granted. 

Cheryl:

So true. And I want to go back to — I’m always trying to be linear and failing. But, let’s go back to 2012 and your personal story. And first of all, Hay has an amazing blog or website where you can read some more that I’ll put in the show notes as well. But because, yeah, I cannot really imagine what it would be like to go from feeling — I mean, would you say in 2011, you felt in normal health, you know, for —?

Hayley:  

I can even — I would, I didn’t give you a great example. When I was 19, I was on the game show Deal or No Deal.

Cheryl:  

Oh, yes. That picture’s on your website. We will link to that. Yeah.

Hayley:  

Yeah. So, it is — I was wearing a tennis outfit because I was an athlete, and I had played tennis for my whole life. And I could have played in college. And I had to quit my senior year because of a heart problem. Now, that’s related to my vasculitis. But we didn’t know it at the time. Because I died when I was 17. I had a whole entire near-death experience and all of that, which I call my death experience. So, coming back from that, I got, I was well enough to go on to Deal or No Deal and jump around, and then go to pharmacy school, and become a PharmD, and then work full time as a pharmacist. So, I had some amazing levels that I took for granted, for sure, of ability and achievement and then got a headache for one day in 2012 with some GI symptoms and never returned to being a full-time pharmacist again.

Cheryl:  

That’s such a, such a rude timing of the universe that you —


Hayley:

It was very rude timing, yes.


Cheryl:

Yeah, you had studied so — because I know PharmD is not an easy degree.


Hayley:

No, how inconsiderate. 

Cheryl:

And you have student loans. I’m just like, ugh.

Hayley:  

Yes, many, many because I paid for my own undergrad too. So, I had student loans. They exceeded $200,000 at the highest point as well, because I had paid some of them down but then they went into difference because we got sick. And I say ‘We got sick’ because it took over our entire household. 

Cheryl:

And how long — yeah, how long had you been married at that time? 

Hayley:

Oh, my. Bless. I’m sorry. I’m from, I’m in Birmingham, Alabama. I’m gonna say bless.

Cheryl:

No, I love it. 

Hayley:

Okay, so my husband and I got married on 10-9-10, which is October 9th, 2010. 

Cheryl:

Hey, happy anniversary!

Hayley:

We’d been together for — oh, thanks. Yeah, it was just recently, wasn’t it? This month, yep. So, we were, we had been together for five years prior to that. But we had only been married, I mean, weeks shy of our second anniversary. Just weeks before our second wedding anniversary is when I got sick. 

Cheryl:

And you were in your mid-twenties.

Hayley:

So, now — in 20, age 25. And I just turned 35 this year. So, we’ve been married for 12 years. And this was actually the first birthday of my marriage that we actually were able to try to celebrate. Because before, it was pharmacy school, pharmacist working, just really hardcore. And then, and then so quickly, it was just all illness, all the time. So.

Cheryl:  

And I know that’s one, because I primarily kind of interact with the autoimmune community who kind of in the younger to middle ages, just because that’s who’s on social media, where I am a lot. And I think it’s a lot of huge fear of a lot of people is, you know, will my partner stay with me, or so — I mean —

Hayley:  

I cannot even. That is, that is — that is the truth. And it’s really scary. And it’s really sad. And that is, I will say this, I’m a fall risk. I like to say this. I like to say, “I’m a fall risk.” Everywhere that I go into, I’ve always been labelled a fall risk bracelet. I had a very bad fall last year. And I experienced what that was like.

Cheryl:

I’m sorry. Yeah.

Hayley:

The whole — it’s okay. I’m a fall risk. But I say that now in this context, because I can only know my own experience. And so, I really don’t want to speak into the heart of anyone who might be experiencing anything with their partner, because that is — we had our own story where it was extremely, extremely trying on our marriage and our every aspect of our lives. But one thing my husband did not do was completely give up. He stuck around. And that is, I know, an extremely rare blessing. So, I don’t even know. So, that’s why I say I’m a fall risk with a lot of these topics. I just feel at a loss because I don’t know what to say into that space. And also, that’s why I speak there, then I fall on my face because I don’t know the exact experience. 

Cheryl:  

Well, the one thing that we are all are an expert in is our own stories, you know, and that’s your story, that you have a partner that stayed with you. And that’s, I think that will give a lot of people listening hope if that’s one of their deep, dark fears. You know, I joke sometimes in my illness — and like not to play like suffering Olympics. I always say it’s not, it’s not good for mental health, but objectively like, I have not had this. If you, just as a gross measurement, like I haven’t had this severity of illness that you have, I think that’s just objectively true. But I joke. Yeah, it just is — but at the same time I joke, yeah. But I’m like, my husband’s like too stubborn to leave, because he’d be like, he’s like very — we’re both very stubborn and very optimistic. So, I think we both kind of just will be like, “We’ll fix this. We’ll find a way. We’ll find a way.” Yeah, anyway. Yeah, he would never.

Hayley:  

I do like to speak up for that, too. I do actually really want to speak for just a second on my husband being that partner because that was not always the way he was encouraged to go. He was given — in times when it was very tough for both of us — we were both given advice that because no one can know exactly what you’re going through, they were all well intended. But you know what we say with well intentions, it’s not always the product of what comes out. So, it always, to me, it also just tugs at my heart and I want to say, I love my partner. I love him. He is my best friend. Neither one of us are here by chance because we worked. We survived in every avenue. We were dying. So, it was like, our relationship included. It was extremely difficult and it would not have been possible without God and Jesus. But it definitely, definitely would not have been possible also without communication and just the grace of the Lord. I don’t know how else. It was not us. There is hope. But man, I understand. I understand that I don’t understand, you know. Like, I understand that that’s something I do not, I do not know. And it wasn’t fun to be me either. So, I don’t know. That’s helpful, right?

Cheryl:  

Yeah, no, no, I mean, just the fact that you’re still together just on — with nothing else is, does give hope. But I agree that I don’t want it to be, I don’t want to say that in a flippant way. Like, I want it — like, it’s kind of like the way I talk about acceptance. Acceptance sounds like the easy way out. It’s actually the hard way out, like, you know, and having — 

Hayley:

Very much the hard way, yes. 

Cheryl:

This, you know, it’s easy to give up and walk away from someone, it’s harder to stay together when times are tough. So, yeah, so in your guys’s case — I’m sorry, we weren’t even planning on talking so much about —

Hayley:

No, we weren’t, we weren’t. 

Cheryl:

But again, we have all talked before this that, you know, the conversation always meanders into interesting territory. But yeah, so communication helped. And sometimes I’ve heard people say, I know that I think this was was brought up at some point. We both attended, again, like you mentioned, the Autoimmune Community Summit through the Autoimmune Association that, yeah, one of the talks this year in the middle, they talked about how — well, and also that survival mode kind of brings your priorities into sharp focus. Like, you’re not kind of — you’re not, like, most newlyweds, like we’re arguing, like, “You left your socks on the floor,” or like —

Hayley:

Oh, yeah. Oh, yeah.

Cheryl:

It kind of brings like —

Hayley:  

We definitely did not get to do that. We did not get to — it was very interesting, too. Because even just in the past, say like six months, I’ve started to be able to, I’ll just give like a little… I’ve started to be able to sit up, I’ve started to be able to walk, I’ve started to be able to like, walk with endurance, I mean. Because when I lived in the nursing home in fall of 2018, I really learned walking, and I regained that. But the endurance part of it was always just gone. There was just so much fatigue. It was the hollowed out feeling where you are just the thinnest, wafer shell thick, and that is your whole essence. That’s how I existed feeling like, at least. And so, I felt like any wisp of wind would just blow me away. But at the same time, I had gained 200 pounds. But I wasn’t doing, I wasn’t eating, it was all my body not knowing how to react to everything. And so, just this year, I’ve been able to walk better, I’ve been able to maneuver around my house, I’ve been able to go downstairs and try to fix my husband dinner instead of, you know, eating through bed and all this stuff. Like, I walked out to the mailbox the other day, you know. I’m making great strides. And so, in this respect, that’s why I seem so full of hope and so happy. It’s because I’m just so thankful I can even be speaking with you and have attended that Autoimmune Community Summit. And be, maybe, maybe, because most of us who go through maybe the depths of the severity in all our own individual ways, however that manifests, with whatever our thing is, whatever I can hopefully speak toward my version of the depths and what that felt like. 

And I’m hoping now that I am able to sit up and converse and maybe share my story, that I can give a voice to some feelings that are very difficult to relay, especially when you’re stuck in the survival mode where you have no energy, and you can’t even use brain power to even try to get someone to understand how you’re feeling. Like, they asked, people would always ask me, “How are you?” and I felt like — and I addressed this on my site at one point too, because I felt like I wanted, I wanted to tell them in all honesty, “I am not doing okay. Like, this is not going very well.” But I also didn’t have the energy to fulfil that statement. So, a lot of times I would get stuck between honesty in friendships and relationships, and my disease. And it was like there was a block. And there’s a big solid wall between the understanding of those two pieces. And it also depends on how many spoons you have that day, Christine Miserandino’s spoon theory. So, it’s just, it’s a whole big ol’ combination of things together that stop us from being able to accurately express our experience with chronic illness life. And I’m hoping that with these blips of health I have right here — which I’m saying ‘health’ and I’m still hooked up to an IV and I’m still on oxygen. But like I’ve explained, my little bit of health I have going on right here and my definition of it, I’m hoping that maybe just being able to share from the depths, it might allow people to feel more in common and to feel less alone. And to know that hey, it’s — Hay’s still here. Hey, Hay.

Cheryl:  

Hey, Hay. [Laughs]

Hayley:  

In a different way, try to say that a different way. To let people know that at least somebody’s out there trying with energy to give voice to what it was like for that person. And that person is me.

Cheryl:  

Yeah. Yeah. 

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And I want to, I want to ask more about that really, really low period in 2018. But before that, I just want to, because I don’t want to forget to ask this, did you start any new treatments? Or do you have any idea why things have taken a turn for the better health wise now?

Hayley:  

Yeah, I definitely have a lot of different, a lot of different — it’s a balance, right. And so, everything, I think of like a one of those electronic digital mixing boards where like, first round, where you see all the different lines going up and down, right, you got to get the perfect, exact alignment of all of them for the right phase and the right, you know, all of these different things. And for me, that’s you got to get a little bit of this, you got to get a little bit of IV therapy, you gotta get a little bit, and the IV therapy has to be Lactated Ringer’s, it can’t be normal saline, you need to have, you know, so it was also specific because of how in depth and how individualized my diseases got in their specific combination, how the treatments fought against and exacerbated the other diseases. So, we were just fighting against what seemed to be an impossible, like walking an impossible tightrope. So, I tried and failed so many different treatments over the years, and I was a pharmacist. So, I mean, I was familiar with the appropriate way to try a treatment, to know this treatment did not work, or this side effect is from this treatment. So, I had a little bit of an advantage in that respect, where I was able to say, “No, I can’t start all of these treatments new at the same time, we have to do this one and this one.” So, I had a big advantage in that respect. 

So, over the years, I was just simply trial and error, but in a way that was very specific to my body and knowing just intricately, okay, we got that one little column set and things worked pretty well when that base column is on this exact setting. Now let’s move to the very next one, and the very next. And so, it became a process, like a chain of dominoes. And then, this year, finally I had a colonoscopy hit, because I’ve had — oh, my gosh, I’ve had four fecal transplants because I’ve had C. diff several times. And my body, because of my immune deficiency, cannot handle all of the, like all of the treatments for it. And anyways, it’s a very difficult combination. So, that’s getting me sidetracked because it is a very difficult combination. So, I’ve tried many things, but like, for example, like Humira or something, I couldn’t do Remicade. I couldn’t do Humira and be safe, because I would catch all of the infections then, and I would just be sick from head to toe with all kinds of infections. And I’m allergic to, you know, penicillins. So, yay, you know, it’s just a good combination. But I don’t know. It’s, eventually, over the years, what we found was kind of like an equation that worked and that’s I guess how I would explain it because this year we found, we had a doc. I have about seven specialists and they all — thank Jesus — they all coordinate together and speak together. Only because of the — only because of where the palliative care aspect. That’s why. Like, only because of how difficult things got. So, it all just works together.

Cheryl:  

And just real quick in case people haven’t heard what palliative care is like, comfort care or like end-of-life care.

Hayley:  

Typically end-of-life care, yeah. Comforting end-of-life care where you switch and your goals are now different. Your goals change from, say, a treatment to prolong life and hopefully impact in a positive way, dare I say, remission or cure, you know, those big words. But that’s typically the goal. But then, when you swap, you switch your goal over to palliative care. That is comfort care, that is end-of-life care. It is definitely — we sat down, made our wills with an end-of-life lawyer, all that. So, it’s a, yeah, I guess this is going to be a pretty heavy…

Cheryl:

Well, and it’s so important. 

Hayley:

It’s my story and it’s so important. People can’t speak from this spot very easily. And that’s why I wanted to.

Cheryl:  

No, so, thank you. Sorry, I didn’t mean, I’m just saying, validating. And I think actually, you know, regardless of whether you have a chronic illness, thinking about end-of-life care is actually something that everyone should be doing. Because you never know. There’s this woman in Seattle that started this website, and I hope it’s okay to swear it, but it’s getyourshittogether.com. Get Your Shit Together. 

Hayley:

Oh, that is appropriate.

Cheryl:

Yeah, because her husband went out for a run, had a heart attack, died. And they were like, you know, they had two small kids, they were in their 30’s. And like, it could happen to anyone, you know. And so, she actually has all these templates. My husband and I did them before my son was born just because — even though we should have done earlier — but, you know, because I was pregnant, we were like, okay, in case we know things can go wrong with that on top of having chronic illness. But anyway, but in your case, that’s really preventative care. But when you actually have doctors telling you, “It’s time to start palliative care,” that means that —

Hayley:  

It was the weird thing. It that was definitely very, very clearly and very quickly, we had some friends — see, one thing that I’ve learned too, is that because we were so out of step with everyone around us in our age group, you know, we’re not experiencing the same stages of life. But we were the same youthfulness, you know, we were the same decade, but we weren’t experiencing the same things. And we weren’t experiencing what we had thought we would experience either. So, it was really interesting. We are so thankful. Bless all of our friends. What we found is sometimes the capacity, you don’t even know you have the capacity that you have to contain all kinds of, and withstand all kinds of difficulties. But one thing that we really learned is that the way that you receive and hold other people’s stories, and their lives, and their experiences has to be infinitely more gentle than you ever would think that you should. Because the initial reactions, a lot of time, that people would have to us if we say, “Hey, we had to get our papers together. We had to get our wills together,” we had a few people who their first reaction — just naturally, it makes complete sense — they’re like, “Oh, that’s good to do anyway. Yeah, we need to do that.”

Cheryl:  

Kinda what I said. Yeah, sorry.

Hayley:  

Oh, no, no, no. It’s fine. No, but what you said is good. It’s true. It is completely true. What you said is true. And I want everyone to hear it. Please, please, please get your stuff together. You can say that all day long. That is amazing. So, it seriously is important. But I do also want to point out as well, like everything, there is some nuance to it, because ours was out of necessity as opposed to out of, you know, it’s good to do. And we understand that that’s not something that anyone around our age would even like, begin to go down that lane. Of thinking, “Man, we need this because we need this right now,” you know, fortunately, hopefully, not going to be on your to do list today, you know. But it should be. It should be on your to do list, but just with a different motivation, pushing it. Just with a different perspective leading it through. But like I was saying about the what our friends’ initial reactions would be, because of our extreme, just the extremeness of our experience, my husband and I — that’s why I say ‘our’ as well — because it totally flipped his life as well. So, anyways, the extremeness of it has led me to know that whatever people’s first reactions are to what we are saying to them or opening up to them, whatever their very, very first thing they say is, that first thing is the one that you just say, “Okay, that’s theirs,” you let it roll off of you. Because it’s gonna say more about how they’re receiving it internally than it is about how they feel toward you. It’s all about how they’re receiving it. 

So, for example, the whole like, the whole getting the will thing done, and then I literally haven’t sat at the kitchen table in years, but then we go sit at the kitchen table to do our will. And so, like, when I, if I feel even safe enough to address that conversation with any of my friends or loved ones afterwards, and have the energy, and then I’m able to devote, like, that’s what I can do with my energy is then speak to them about that topic. If I get to that point, then I understand it’s also going to be blunt, and fresh, and raw, and an awakening for them as well. Because we were not prepared for this to hit us. It is very difficult to also just speak about it or speak with someone you love, let alone speak with anyone about the rawness and the reality of making your will because you need it at age 29, you know. And so, it’s the reactions of, “Oh, that’s just good to do,” I know that is exactly the appropriate reaction that you should have and I want people to have, because I want — that’s exactly the point. I want y’all to do that. So, that when and if ever there would come a time, you don’t have to do what we had to do. Like, you were there. And you are settled. And you are fine. And so, if you can’t start those conversations because maybe your relationships aren’t what they once were, or maybe you’re having to share things with people who used to love, but maybe not quite right now loved kind of thing, you know, I really do hope that my words speaking from this place can go forward and maybe be an icebreaker, or even just be like, “Hey, we got to do this before something like this, you know, comes up,” let’s never have that happen, hopefully. But I feel like going through all this extreme stuff and now having a little bit of an ability to even speak, I’m hoping that maybe some people can hear a little bit of a story from that area of depletion, because the people who are that depleted cannot exert their energy towards speaking.

Cheryl:  

Oh, yeah. And I think that something that my therapist has taught me related to this is that oftentimes, we are taught from a young age to avoid discomfort. And so, often, a lot of these things that we say that are kind of inappropriate to someone with chronic illness, or an acute illness, or, you know, end-of-life situation, it’s like when people say, “It’s all gonna work out. You’re gonna beat this, you’re gonna —” it’s like, I don’t want, I am too uncomfortable with the idea that you might not beat this, or I’m uncomfortable with the fact that you’re 25 and you’re having to do end-of-life care, that I’m going to comfort myself and attempt to comfort you by saying, “Oh, that’s just a good thing,” you know, but you’re like, no, that’s not the point. Of course, it’s a good thing. But the point is I have to do it. I don’t have a choice.

Hayley:  

Yes. And the point is, please do this. So, you are not in this scenario, though we couldn’t have done it any sooner. It was ours, just came up as it was. But we hope that doesn’t happen for others. But it’s really interesting, too, because my uncle had written a book like a long time ago when I was a little kid. And it was called ‘Wants, Wishes, and Wills’. And it was about preparing for like the end-of-life. And I feel like it was in the 90’s or something, because I definitely didn’t read it or even like, really know much more than the title and what it was about, you know, it’s kind of one of those floaty things from your data that like this existed. But it certainly came back to my mind. I didn’t know much about it, but it certainly came back to my mind around that time. I was like, oh, maybe he was on to something.

Cheryl:  

Right. But it also ties into something we had talked about before, which is, you know, resisting the impulse or the pressure to force your illness into a tidy narrative. And, as I’m sure people can tell, given how eloquent you are, you are also a writer, you know, but, you know, you wrote to me when we were emailing before this that, you know, sometimes you don’t get a full character arc with everything all tied up neatly in a bow. 

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And so, yeah, I would love to hear more about like, times when maybe you felt pressure to quote-unquote ‘get better’, or people asking, “Are you better yet?” you know, or what’s helped you? Anything you want to say?

Hayley:  

Yeah, that is so — I love that you picked up on that also out of what I had answered, because being a writer, and being literally in the area of publishing, where I was interning for a literary agent, like I was reading manuscripts, I was helping my friends who are now one of the first chapters that I read, I read it in a manuscript, and it became a number one New York Times bestseller. So, this is how I was on that road. And I was very much in this space. And I love it. And I love writing for kids. But that’s where I originally started, I wanted to do young adult and middle grade, and I still have a middle grade book that I probably have to get to getting back out there. But just because my journey got stopped so quickly. But with all of that study, and all of that knowledge of character arcs, and the way that we are so used to stories in 45 to 65 minutes, you know, to have the full wrap. It’s like, “Here’s the problem. Here’s the answer. Yay, we’re done.” And like, you wrap up, and you’re done. And that’s because of television and all the way we consume media. And like, sometimes, you’ll be able to get a seasonal character arc, like where or somebody over a series gets even deeper growth. And we like those shows better. Because we know, we know who that person is, and we can follow them along; it’s more realistic to life. 

And it’s so difficult, especially with social media, for you to give an accurate representation of the depth of what you’re going through as a chronic illness patient accurately because you are on, what I said in one of my earlier posts was, you are on a blindfolded roller coaster that you’ve never seen. You’ve never even seen it. And so, you don’t know how long it lasts, you don’t know where it’s gonna turn, you don’t know anything about this. And so, there are some days where I can pop on to my Instagram and say, “Hey ya’ll, I walked to the mailbox today. This was amazing. And it was a big deal.” And then, there’s the next day where I didn’t get out of bed and I made no posts on Instagram. That doesn’t mean that I was still skipping to the mailbox that day. That means I didn’t post. I don’t know what I did, you know. I could have just laid there. So, it’s very difficult to even, like it can exhaust people just like it exhausts us to be sick for forever. It can exhaust our people to not get resolution, every time. That becomes the only thing they can ask you about, you know. Like, well, “How’s Hay doing with this? How’s Hay doing with that?” And it’s never a full, “Oh, she’s doing great, we’re good,” you know, like, in specifically here in my world, because my world is very much my faith and spirituality section goes with Jesus. And so, that goes straight through that lens where people would pray. They’d be praying, and praying, and praying, and then they’re like, “Oh, yeah, she’s still sick,” right?

Cheryl:  

Oh, I see, it’s this pressure for the prayer to like, “Has it worked yet?” Okay.

Hayley:

Yeah, it’s all kinds of stuff like that, too.

Cheryl:

Yeah, interesting.

Hayley:  

And so, just like arcs, it’s we have an insatiable need and desire for happy, full character arcs.

Cheryl:

Happy endings, yeah.

Hayley:

You know, the give the happy ending kind of thing, you know. And if not the happy ending, then at least some kind of denouncement, like some kind of resolution or something, you know. And it’s not — that is, we all know, we all know if we’ve lived any moment of life, we know not everything gets the resolution. And as a matter of fact, the things that get a resolution, we should actually just throw little parties for those. Because resolutions are just like, they should be celebrated. They should not be expected, they should be celebrated.

Cheryl:  

Yeah. The diamond in the rough. Yeah, yeah.

Hayley:  

They are the diamond in the rough. Yes. Aladdin. Yeah. So, yeah. It’s just something that struck me greatly as coming from the writing space and as a writer, and like critiquing manuscripts, and learning about story structure. That like, there’s this thing called like, Save the Cat. It’s a beat sheet where of how to like, you need to have a problem, the cat needs to be in trouble, you know, you need to save it, all these different things. And it tells you like the general story structure of what our brains and our minds just expect in a complete story. And so, with social media and with chronic illness where you drop off, because you’re devoting your energy to your necessities, it turns into kind of like a hit or miss game, you know, and you’re just like at a carnival game, and you’re just like throwing balls. And you’re like, “Well, I thought this one was gonna hit that dude over there. But it really was down here to hit that one over there,” and that doesn’t describe at all what I felt like when I was throwing it, you know what I mean? So, it’s one of those kind of scenarios where you just can’t, you just, just like life, cannot be wrapped up with a little tidy bow, unfortunately. 

I think it’s our responsibility, though, just as like being a good person and being an empathetic human, to not hold our friends and relatives to the standard of they have to be presented as a perfect package, too, you know, and not be wrapped up as a bow. Because if it’s not happening for me over here, and I know it’s not. We all know, no doubt about that. And then, it’s going to be really difficult for everyone out as well. And I tried to hold that spot. Now, I try to hold a little bit of like a hole there, and just say this phase, I guess, is a little bit of grace, or a little bit of, you know, leeway where I can say, okay. That’s why I say I would let the first reactions roll off of me, because it’s more of a reflection of what they are confronting, than it is — like what you’re talking about with your therapist — with than it is of what’s on me. Like, the first time a really good friend saw me after I had gained 160 pounds and I had forgotten to tell her. And she walked in the room, yeah, and she stopped and she goes, “So, we’re a little swollen today.” And I was like, that was the kindest way to address it. I was just thankful that her initial response came out that way, right, as opposed to all of these other ways it could have. And it’s just shows me the importance of an initial reaction in my own self, when I’m addressing anything outside of my own experience.

Cheryl:  

Oh, a hundred percent. And one of my favorite phrases I learned — and I can’t remember whether it was my therapist, or the book ‘The Happiness Trap’ by Russ Harris, which is a fabulous book I talk about all the time, but it’s about Acceptance and Commitment Therapy and like accepting uncertainty. Let me see, how to stop struggling and start living. It sounds like it’s like a vapid, like pop psych book, but it’s actually really deep. And it’s about like, actually suffering is — suffering is the default condition of life, like we were just talking about. And then, if our expectations are that we will suffer, that’s part of life, then we won’t be chronically disappointed when we do suffer, you know. But one of the phrases that he said, I think Russ Harris, or maybe it’s my therapist, but it’s said a lot in the mindfulness community, is like riding the waves of uncertainty. And so, I’ve started saying that sometimes if someone’s asking me like when I’ve been having more like flare ups of my chronic health issues to be like, “How are you doing?” I’ll be like, “I’m riding the waves of uncertainty,” like, and that means that like —

Hayley:

Yeah, that’s a great way to phrase it.

Cheryl:

I’m not happy about it. Like, but I’m accepting that. But I think uncertainty, like my therapist really helped me hone in on that. That was my big, that’s been one of my big triggers. And I kept being like, “Well, yeah, but I don’t like uncertainty, but I just, I’ll just find the certainty. I’ll just find the answer,” you know what I mean? 

Hayley:

[Laughs] Yeah, of course. Like, yeah, it’s that easy. Of course.

Cheryl:

Yeah. I was like, okay, that’s true. And he goes, that’s true for solvable problems, but you don’t always —

Hayley:

For solvable problems.

Cheryl:

Yeah. Chronic illness is not necessarily a solvable problem. Some people will find a solution. They’ll drink celery juice or they’ll take their medicine, and that, but —

Hayley:  

Yeah, exactly. That won’t be the same for everybody.

Cheryl:  

No. And that’s where the whole resolution, like a story is a, you know, a problem and then the resolution of it, that’s where we have to say in a chronic illness we have maybe things that are partially resolved. But a lot of these problems are perpetual. So, then this happy ending for me has, I’ve started to become really interested in like, can the happy ending actually be coming to terms with these unsolvable problems, you know, and trying to maximize your values, and meaning, and joy in your life with the uncertainties. 

Hayley:

Where you are. Yeah, exactly. Right where you are. That’s very good wisdom. Because that’s ultimately, I mean, I don’t know how else to say it other than like, the National Treasure, the second movie, they’re like, the riddle is ‘The debt that all men pay’, and the answer is ‘Death’. And to me, though, it just, it really resonates a little more. That is why I love kids books and stuff, because it is an adult lesson. So, it’s being said to children like Madeleine L’Engle said, that’s a quote from her, but I just messed it up really bad. But anyways, it’s a thing where it just, the fact is, we all share, as humans, we share the fact that we are going to die. And that’s like a very tough concept to confront face on. But it is the one thing that we all have in common with our existence. And so, we all feel that and process that in different ways. We approach it in different ways. 

But unless we are comfortable, not that you have to be super comfortable with that fact. But I mean, like, unless we are familiar with even confronting the fact that we’re not a permanent structure physically here, then we can get stuck in the realms of certainty and being like, “Well, this is what I need and that,” you know, but when we acknowledge that, well, ultimately, I don’t have any control over this part anyway, because it is gonna end in the physical here. And for me, personally, it keeps going in the spiritual, but I do think there’s a spiritual element that helps, too, to also see beyond that. But man, having faced death a few too many times now, it is a thing that I don’t really want to be comfortable with it. But I also do not want to be unfamiliar with my personal response. I want to just be practiced and measured so that, too, I can provide a practice and measured and wise comfort to those around me experiencing it. Because it is gonna hit everybody at some point. 


Cheryl:

Yeah, yeah. 

Hayley:

And the patient and the caregiver, like everybody will be a patient or a caregiver at some point in their life. It just is how it works, you know, and it’s similar to that. But anyway.

Cheryl:  

So, yeah, no, and I was gonna say, like, I’m wondering when in — even though you had experience with health care, I wonder if like, when you first started getting really sick in 2012, like was there a tran — like, for a lot of people there’s a transition between like, I’m getting really sick and I’m thinking about it in the acute illness model and like, I just need to find the right doctor, and find the right medicine, and find the right treatment, and then we’ll get past this. Like, what was it like to go from like — did you have that experience first, of wanting it to just, okay, we’re just going in thinking it’s a short-term thing. And then, what was it like to have to come to terms with it being chronic, is like a whole life. I know we don’t — please tell me, by the way, how much time you have ’cause I know we’re already going a little over time.

Hayley:  

No, no. You’ve seen my power flicker a couple of times. I don’t know. Something just started like brewing outside. So, we’ll see. But I’m doing I’m great right now. But no, that’s it. Yep, that was the very first — yep, I’m just gonna say yes. Nail on the head. Boom, Cheryl hit it. But that is what we all experienced, I feel like, because we all don’t know if it’s the sniffle, is what is the sniffle? You know, for the pain in our back, what is causing the pain in our back? So, it could be infinite things, like microscopic, macroscopic, you know, they’re just, could be all the way down to the cellular level something or it could just be, oh, you bruised it a tiny bit, or you bumped it, or something, you know. So, at the very beginning, the the toughest point for me with dealing with the acute versus chronic nature of the illness was simply in the form of people asking me, “How are you doing?” It was that. That was the only thing that spotlighted it for me over and over. It’s like, I know I’m living in my reality. I know that I’m living in illness. I know that I’m still sick. Trust me, I know. And I know that y’all care. And I know that y’all really do love me. I just also don’t have an answer. We don’t have answers. And now, there’s six doctors that don’t have answers. And now, there’s another doctor. And you think it’s hard to get an appointment with one specialist, you know, when something goes wrong, it’s very, very difficult to keep getting appointments with specialists when the answers keep being, “We don’t know,” or, “There’s something a little off, but we can’t tell what.” And then, you just keep getting that. And you keep feeling sick. So, there’s always going — I feel like with every illness, there is always that tiny, little fear. And everybody says, I know a lot of my mama friends know, they would say the same. Your kid gets a little fever, and you’re like, we got to hold up here, full stop, because your brain will domino into all of the scariest possible things? And it is okay to do as a mom, by the way, that’s a protective mechanism. But —

Cheryl:

Of course, yes. Yeah. 

Hayley:

But I cannot speak any more to the mom part. But I can say, that seems similar to how I think we all innately approach any kind of sniffles we get or any kind of twang in our back. And it, really, for me, what helped was when I kind of — there was such a fatigue, and there was such a cloud that came over me, that was not a mental health cloud, particularly at the very beginning. But it was the brain fog cloud, or it was where there were waves of, you know, flares, worsening and symptoms worsening, and then receding just a little bit, but I was still extremely sick. And so, because there was no ultimate full on relief, and I did not experience it at any point after my initial headache. Hey, I was on 186 days of bed rest when I came home from my very first hospital stay. So, it was something where and I, yep, I definitely did that math. Had enough time. Very good. But it was an experience to then also try to relate to concerned people around, or just anyone in our lives, like my job, like, the people that I worked with. Like, “When are you coming back?” like, “What’s all the paperwork like? Are you going to keep your job?” 

You know, it was a very, there were so many aspects to being sick and being sick for longer than just a week or two, that it was very — and we didn’t have long COVID even yet, you know, we didn’t have a lot of that yet. We were, yeah, we were in a different era. And even now, we don’t know exactly, you know, like what we’re dealing with, but with long COVID or anything like that. But there is so much more awareness for autoimmune type illnesses now that that certainly, I hope, will help. And that’s certainly why I hope to speak some, and see if my experience might be able to help at least give some awareness or give some people who don’t have the energy, or don’t have the words, or don’t have the hope to be like, I don’t know, maybe. Maybe it’s okay. Maybe there’s more people like me out there that are living this kind of life, but we don’t have the energy to sit up and talk all the time about it. So, if somebody can just hear this when they’re laying there and all they can do is listen to podcasts, hey, friend, I feel you. There is hope.

Cheryl:  

That was gonna be one of my other questions, is just what was a day in the life like when heavy things were at their most rough? Like what, maybe, I’m assuming it’s in the nursing home and maybe not.

Hayley:  

Oh, I think that’s a good distinction too. Because in the nursing home, I flourished.

Cheryl:  

Oh, okay. See, so, assumptions. Assumptions.

Hayley:  

See, it’s a very interesting — but that’s, I feel like that’s what my story is all about, is about literally everything flipped upside down. Like, if you think one way, just flip it. That’s what’s gonna happen. But it wasn’t — it was, as you would believe, it would be trying on our marriage and trying on relationships, yes. But as far as my health went, I was getting personalized, one-on-one attention with multiple different kinds of therapists. And I know you know what that is like, with occupational therapy. But isn’t that what —

Cheryl:  

Yes, yes. No, that’s true. And I’ve done an internship in a skilled nursing. No, you’re so right. I’ve seen people have that flourishing experience where their, the burden of their care is spread out between so many experts, and you have a lot more support. Yeah.

Hayley:  

Yeah, it was a really unique thing in that respect. A lot of — I mean, I still had to do speech therapy for learning how to eat again, because the muscles, you know, that’s a skill, man. That’s a skill.

Cheryl:  

It’s a very complex, yeah, it’s a motor muscle activity. If you think about it the same way that talking is, you know?

Hayley:  

Yeah. So, my worst, I guess, prior to that, there will be days that I learned about — I know this — there will be days going forward that I learned about from my husband, and from my mother-in-law, and from people, my aunt who came right up next to me right beside me, and were the ones carrying me, you know, during times where I have my own version of it. I know what I experienced. There was one particular time that I guess I would — I could start with this one. I have a sewn in IV line in my chest called the Hickman. And it’s permanent. And that’s what it’s intended to be. But also, no line is actually permanent. It cannot be because of, you know, the way they wear out, or infection, or anything like that. So, this is my fourth one of these, okay. And since I’ve had three more before this, we were running out of places to put them. And they had to, I had to have a line because that was how I ate my vein food. That was how I got my hydration and nutrition. And so, when I got at my worst, I’ve had one time where this exploded, the line itself. Yeah. And I woke up as it was, it ruptured, and there was blood just freely flowing from my chest everywhere. And then, my husband had to — he woke up, because I screamed his name, and nightmare of all nightmares for what he saw in that moment. 

So, we’ve had moments like that. And then, we’ve had moments all the way to where I’m, in my mind, the way I am living is breath to breath. And the breathing is not easy. And my husband has been told, “She has 24 hours. She will either be gone in 24 hours, or she’ll be on a ventilator and then she will be gone.” And he was told that by my critical care pulmonologist who is still my pulmonologist to this day. But that was back in probably 2015 or 2016. He was told that, and I was in the room. We were in my ICU room in the hospital, and my doctor was on one side of my legs at the end of my bed, and my husband was on the other side of my legs at the end of my bed. And they were speaking to each other about me. And I thought I was a part of the conversation. I really truly thought, “No guys, I’ll be, I’ll definitely — I’m in here. I’m for sure gonna be okay. We’re gonna do this thing.” I wasn’t speaking, you know, I wasn’t able to vocalize that. 

So, these are the, just the very basic, quick brushes, broad strokes over some of the depths of what we went through and been carried. Lots of places. I’ve spent a day just everywhere you could imagine in the depths of you being real sick. Just extend that, your worst moment, extend it over the course of a few days. And then, it’s just — and just completely helpless. Like, literally, I cannot do a single thing for myself. I lost my eyesight one time, because I’ve had septic shock two times. I’ve had like four times with sepsis, maybe more than that, actually. But it’s all these things where I just should not have survived them, first of all. So, thank you, Jesus, I have a whole ‘nother thing with that. But that doesn’t necessarily — that’s just a whole personal thing there. Because it’s been a long road. And I’m only speaking from my experience, because that’s all I can speak from. But there were a couple of times where I lost my eyesight in the middle of my emergency room fiasco, you know, because everybody’s trying to — you have septic shock. This is very dangerous, you know. Let’s get everything going right now. And do you know who you are? Do you know what septic shock is? Do you know what day it is? All those kinds of things. And then, my response to that, because I remember this very well. My response to that was, “Are you still standing in that corner of the room? Because I can no longer see anything.” 

Cheryl:

Wow. 

Hayley:

So, when we started learning — I mean, when I started losing abilities like that in a very… 911 had been called, you know, all this kind of manner. And then, my doctors would show up to the ER, too. That’s how close to death I was several times, where they are at the ER with us because we think this one’s it. My husband had to say goodbye to me four times. Four times, we said actual, real deal goodbye’s. Like, really, really. And one time — there was a fifth time — that I said it to him on video, because I knew he wouldn’t make it in time. So, I have a video. There’s a couple videos like that that I have that are very — there were a couple that at the time I deleted. My husband took one video of me just so that, he said so that he could show people when the doctors asked about what was she like before, you know, this horrible thing happened or something like that. And he would just show them the video and be like, “This is what she looked like before.” And it was literally, I watched the video, like a day later, this one in particular. And I was laying on a bed. I had absolutely — it looked like I had inverted, you know, like my skin was now in, it was sunken in. And it was not rosy in any way. And then, it was just my breath was very shallow, with a little bit of the [gasp sound] kind of thing, if you could hear it at all. So, and I wasn’t moving, I wasn’t doing anything. I was staring straight up. My eyes weren’t focused and anything, you know. I don’t even remember him taking that video. So, we have those kind of depths. I don’t know how else to say it, but that we have those kinds of depths.

Cheryl:  

No, and saying, I know, again, I know it takes like, emotional labor to share, you know, publicly these stories and experiences with that. And I, like we said earlier, I know that’s going to help others feel less alone. And like, I’m just, I’m curious if, again, if you have if you have the spoons to keep talking about it, do you feel — and this seems like such a basic question — but do you have like a sense of real fear and anxiety around death? Or is it at this point something you’ve kind of like, because earlier on we were talking about how it’s like death is inevitable and we’re all gonna die. But you know what I’m saying? Like, because you’ve had such — I feel like you can go either way. Like, you can either become super, super, like anxious and nervous, or you could just —

Hayley:  

And I will tell you, I have gone both ways. 

Cheyrl:

Okay, okay. I guess, again, there’s no tidy narrative.

Hayley:

Yeah, yeah, exactly. I’m as human as it gets. Just like anybody would expect. And therapy, all of it, just like anybody would expect. It’s definitely appropriate to say I grieve, have grieved, am grieving, will continue to grieve. I don’t know how long because I don’t know anything about the future or anything like that. But I can tell you about now and today. And today, I’m doing pretty well with that concept. My faith, again, is a big thing for me. But I did, still, it’s important for people to know like, just because I say I believe in Jesus and all of these things, that does not mean, “I’m a hundred percent good. Let’s go, yeah! Let’s go ahead and roll on out.”

Cheryl:  

Yeah, and, “I’m at peace with everything in the universe.”

Hayley:  

Yeah, I’m at peace with everything. Yeah, no. Now, I do believe there’s access to that. But it is not… Whoa, humanity. It’s so hard. So, no I’ve definitely been through the stages of the anxiousness, but it wasn’t ever anxiety in the, like in particular, one time when my husband raced to the hospital to say goodbye to me. There were — the crash team was being called. And it was — I don’t know how else to say. It was the God thing because my personal nurse practitioner who was like my primary nutrition doctor who managed all of my vein food, she just happened to be walking by my room as this happened, and she has two hospitals she goes through. So, when she was walking by my room, she saw that. She came, rushed into my room to just hold me. And there was a very marked, I don’t know, something within these type of experiences changed something within me, to not make me completely cool, and cool as a cucumber, and yay, we’re good, you know, not necessarily, not necessarily to be that confident in my security of no anxiety. But to bring me so much closer to the reality of like, oh, wait. Why exactly — this is just how it is. And this is just the way life is. This is going to happen one way or another. And I have lived for so long in this stasis where I’m just stuck. And so, I have to figure out, how am I going to live while stuck in the ditch? Because what good is it that I’m doing all of these treatments and all of this stuff if I’m also like, I’m just being kept alive to then have another stroke or another — all of those things — pulmonary embolism, brain bleed, all of these things inside of me. And that is a struggle. That is a real question that people have to ask, and we don’t often talk about, and it’s very difficult to bring up. And it’s really hard to face that kind of question. 

But there is a peace for me through Jesus that is accessible, where there’s a moment where when you realize your spirit, your body is going to deteriorate, because physiologically, that’s what it does. Like, scientifically, that’s what it does. And it breaks down. And once you hit a certain age, it’s going to just continue in that pattern. And that is not to say everything is terrible, and everything’s horrible, and everything’s going down. That’s not at all. It’s only to say we are human, and this is how it goes. So, I want to hold as much space as I can in grace, and in kindness, and in love to know that everyone around me is also sharing that same exact uncertainty, and that same exact moment of anxiety, and that same exact fear. And the same exact, the way I phrase it is — this is what the death hold, everything, has become for me — the way I phrase it is because we know deep calls out to deep, we have asked the same questions. We may not be in as serious — like you were talking about, you don’t want to do the severity Olympics, I do not either, that is not cool. And two, plus, I can’t ever be you in your body. So, by default, we can’t actually compare what it’s like. 

So, it’s really a thing where, for me, then it comes down to we’re going to ask similar questions. We’re going to ask what am I still doing here? Why this? Why that? What now? What then? What if? Why this? You know, how? All of these questions, though, what, who, what, when, where, why, and how, we’re gonna ask them. We’re gonna ask them because we are the same when it comes down to the very core of who we all are. We are all human beings. We are all the same. We will ask similar questions. What brings us to ask those questions may be entirely different. But when we drill it down to the essence of it, this is what connects us. And I can go forward knowing I’m not alone in that. I’m not alone in that, because every other person here will also have the same feelings, and same fears, and thoughts, and anxiety; they will just manifest in ways that are more specific to their journey than mine. So, that’s the only way that I’ve been able to — that’s the only way.

Cheryl:  

No, that’s — it’s funny because I don’t come at it from a faith perspective. But I, but I come at it from the self-compassion practice and that’s from Dr. Kristin Neff. And it’s really interesting because yeah, you first have to connect with what it is that you’re suffering. You know, what is what is your source of suffering at the moment, and then you treat yourself with compassion, like the compassion you give to a friend. And then, you recognize that your shared humanity, like a shared, that this part of suffering is part of the human experience. This is not of moral failing on your part, or anyway, so.

Hayley:  

No, it’s not. At all. 

Cheryl:

Yeah, I love it. I love that.

Hayley:

It is not a moral failing. Sickness is not a moral failing. It is not a punishment for something that you did. No. 

Cheryl:  

Yeah. Yeah, yeah. Oh, my gosh. So many soapboxes. But I really, really, super appreciate your time. I mean, I want to talk to you for like, five more hours. But I also want to respect that this is a lot. Maybe we’ll do a part two sometime.

Hayley:  

There’s just one other thing that I did not get to say. 

Cheryl:

Okay, please. 

Hayley:

So, the main survival tip that I would have is the nutrition, hydration, oxygen, and rest. Underneath a shelter. You have to be sheltered. And then, you get — you feel weary, you don’t know where you’re going, you don’t know what’s next. You’re scattered in your mind. You don’t know how to settle yourself. And you’re getting lost in the uh-oh’s and the oh-no’s, the spiral. My doctors approached saving my life over and over again the same way that I’ve been approaching it in therapy, and in counselling, and in speaking with friends, is nutrition, hydration, oxygen, and rest. All of these things are required for a body to survive. So, all of these things are also going to be required for my spirit, my mental state, you know, to move forward successfully in the world. So, that’s just with — that’s one way that I tried to make, like a practical tip. You’re out of balance, out of whack. Check your nutrition, check your hydration, check your oxygen, check your rest, just — and check your shelter. There’s your five-minute check. Just, that’s it. Just give yourself some love.

Cheryl:  

I love it. Bringing it back to the basics, because so often —

Hayley:

Bringing it back.

Cheryl:

I mean, I know from my life, the one that I’ve historically had like kind of shirked on was rest. Like, “Oh, I can push again,” there’s that wayward optimism, “I can push through,” you know, “Oh, I’ll stay up late to do this or that,” phew. But, you know, the rest. And in occupational therapy, we kind of have this framework of activities of daily living and rest is like a different bullet point than sleep, even. So, there.

Hayley:

It is! 


Cheryl:

You know, so yeah, there’s, you could you could lump them together. Totally fine to say, you know, rest and sleep. But they are two different things. You need to rest, you know, because sometimes your mind is actually not very rested when you’re sleeping. Your minds are very active. You know, so yeah, it’s really kind of fascinating. But anyway, side note.

Hayley:  

Yep. Isn’t that — isn’t it exhausting to be fascinating?

Cheryl:  

Yeah, it is. Exhaustingly fascinating to think about rest, which is supposed to be restful. Yeah. But yeah, was there anything else that you wanted to touch on that we didn’t get a chance to?

Hayley:  

I mean, friend, we —

Cheryl:  

I know.

Hayley:  

We went places that did not know we would go but also, it was great. Thank you so much.

Cheryl:  

Oh, no, thank you. And I just love that we just connected like literally four days ago at the Autoimmune Com — was it even five? It was three days ago at the Autoimmune Community Summit, in the comments, just chatting during the speakers. And I was like, I like what she’s saying. And she’s like, I like what she’s saying. So, I love that. 

Hayley:

I was like yay! I like that.

Cheryl:

Yeah, no, and can you — I will be putting your links to your website and your social media, but can you just say, for those who haven’t, you know, what’s your Instagram and Twitter?

Hayley:  

So, my name is Hay Farris, and that’s all A’s, no E’s. So, it’s H-A-Y-F-A-R-R-I-S, like ferris wheel, but with an A. So, I’m @HayFarris, on Instagram and on Twitter, and I share on Instagram and on Twitter, but I have my website where I write specifically about this 10-year situation and my life now and that’s hayfarris.com.

Cheryl:  

Yeah, it’s really wonderful. I really, really encourage you to check out her blog, and again, just really, I’m so happy that you’re in this state right now of, you know, relatively higher energy levels than you’ve had, you know, for the last decade. I mean, that’s something to celebrate. And the fact that you’re using that, part of that mental energy, to do this podcast, I feel very honored. So, thank you.

Hayley:  

No, thank you. I just want people to, I just want people to be able to possibly if they could say, hey, look, I’m not alone in the depths of this moment. And like, surviving. Survival mode is a real, is a real topic. And it’s so hard to talk about it because when you’re in survival mode, you can’t talk about it, you have no energy to talk about it, and to give wisdom about it, and to ask questions about it, or to even listen to other people or search for other people who have been there before. And so, one of the first things that I really wanted to do is like, if I get enough energy back in, I want to share pieces of this because there, it’s just my one experience and all of us are going to have different experiences, but we will ask similar questions.

Cheryl:  

Yeah. No, it’s so, it’s very resonant. It’s very deep. I do think a lot of people avoid thinking about near death experiences because it feels too painful or too scary. But it is something that we are all, like you said very eloquently, that we’re all going to be faced with at some point. Apparently, some people more frequently than others. You’re like an expert. You need to get like an all —

Hayley:

The frequent flyer card. I need the pilot to give me the little pin or something.

Cheryl:  

Yeah, like your next visit is gonna — yeah, no, I know. Yeah. And I’ll put some more — again, because vasculitis is not as well-known at times, I’ll put some more links with regards, like which —

Hayley:  

We have the Vasculitis Foundation here in the USA in North America. There’s a vasculitis Foundation. They’re doing great. There’s like the, I’ve just seen them flourish and blossom over, it’s like, since 2012, you know. The amount of information even has changed so greatly since I was a patient in 2012 versus a patient now in 2022.

Cheryl:  

In three weeks, I’m going to the American College of Rheumatology conference at the Convergence annual conference, and so I’m going to I usually keep my eye out mostly for like the inflammatory arthritis news, but I’m gonna definitely add on some vasculitis sessions. 

Hayley:

Vasculitis, yay!

Cheryl:

Yes, because —

Hayley:

We’re here, we’re here. 

Cheryl:

Yeah, exactly. It’s like scleroderma. It’s one of the ones it’s not as, it’s more — it’s officially a rare disease, right. Yeah. I think you wrote that on your blog. Yes. So, so anyway. Sorry. Yeah. I have a hard time wrapping up conversations.

Hayley:  

No, me too. We’re gonna, it’s gonna be not great. We’re not going to be wrapping up.

Cheryl:  

Yeah, is anyone still listening?

Hayley:  

Five years later, hey!

 Cheryl:  

Is this tape still rolling? Digital is not, it doesn’t — you could just keep recording forever. 

Hayley:

And this is my first Zoom ever.

Cheryl:

I know. I am so proud of you. 

Hayley:

I’m so excited it worked. 


Cheryl:

You are an expert. I love it. And you even have a cute background. I just love it. I love it.  

Hayley:  

Well, I live right — I mean, I live right, this is the bed that I lived in for the majority of those years. And so, I knew that these are all my things, but I try, I did try to squash them more so that it wouldn’t be as, you know.

Cheryl:

Oh, I love it.

Hayley:

More support, but then all my tape started peeling off. I was like, it’s gonna be a mess. They’re just gonna fall off. 

Cheryl:

Oh, it’s so cute.

Hayley:

But it’s fine. This one is fun. That’s one is one of my life sayings, “When life hands you lemons, don’t make lemonade. Make whatever the heck you want.” 

Cheryl:

Oh, I love that.

Hayley:

Definitely, if you want to clone your lemon, and then like cheer some rare disease. Do that. 

Cheryl:

Please do that. 

Hayley:

Popsicles? Make that, you know. 

Cheryl:

Oh, I love it. Yeah, make popsicles. Oh, love it. I love that. Okay, well, thank you so much. And I look forward to continuing being in touch on our various social media platforms. 

Hayley:

Yeah, be friends.

Cheryl:

Yay! Okay. Bye-bye for now.

Hayley:  

Thank you. Thank you so much.


Cheryl:

Thank you.

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