living with lupus
By: Fela M'tima
FELA: Hey Alyssa! Let's start off with your full name and what chronic illness's you are battling and for how long?
ALYSSA: Hi! My name is Alyssa MacKenzie, and I’ve collected a number of chronic illnesses since infancy. (Worst. Hobby. Ever.) My mom knew something was wrong with my GI tract as soon as she began breastfeeding infant me, and from there I accumulated more and more symptoms. My major diagnoses are lupus (which in itself is basically a broad name for a lot of different medical conditions that are autoimmune in nature), Dermatomyositis, Mitochondrial Disease, Urea Cycle Disorder (also metabolic), four different forms of Dysautonomia, Mast Cell Activation Disorder, as well as the complications that arise from any of these issues and, of course, from the combination of all of these.
FELA: For those who are not aware of Lupus, can you explain exactly what living with it is like?
ALYSSA: It’s hard to describe exactly what living with lupus is like because it is such a variable disease—not just from patient to patient, but from minute to minute. I think the pervasive yet limited understanding that exists publicly if at all, especially in the “well” world, is that it’s a disease that affects your immune system and appears with a hallmark rash—the malar rash, or butterfly rash, that spreads across many of our faces.
The fact is, a patient doesn’t have to present with those symptoms to be considered affected by SLE. The basis of diagnosis is such that a disease can look entirely different in one patient from the next. What’s more, there is actually not one single form of lupus. There are four: Systemic Lupus Erythematosus, which is what I have, and is the most commonly known/referred to form; Discoid (Cutaneous) Lupus, a type that affects the skin but not the internal organs; Drug-Induced Lupus, a form of lupus that is brought on by a medication but usually is eradicated when the medication is discontinued; and Neonatal Lupus, lupus that affects the newborn of a mother with lupus, with symptoms usually disappearing after a few months of age if those symptoms haven’t caused permanent damage.
For my purposes, I’ll be focusing on SLE since that’s the form of lupus that I have. A diagnosis for lupus is made if a patient presents with four of more of the following eleven criteria: malar rash, discoid rash, photosensitivity, oral or nasal ulcers, arthritis, cardio-pulmonary involvement, neurologic disorder, renal disorder, hematological disorder, immunological disorder, and antinuclear antibodies.
Hence, the diagnostic criteria for lupus illustrates that it is a disease more akin to an umbrella term for a long list of disorders than it a specific disease with classic epidemiology. One patient may have an entirely different four symptoms than another, but they will both have SLE. Personally, I have lupus because I meet ten of the eleven criteria. And, having had Whole Exome Sequencing (WES) to elucidate the genetic and mitochondrial diseases also impacting my family, I now know I have a specific “lupus” gene passed down from my father, as well as four mutations seen in patients with lupus, but which are as of yet “not clinically significant.” The further complication is that I have a myriad of other health conditions that are not explained by lupus at all.
FELA: I read on your blog about you beginning chemotherapy. With this not being a cure, what are you hopeful it will help symptom wise?
ALYSSA: One of the first rheumatologists I ever saw said something to me and my parents that will always stick with me. In response to my dad clearly feeling anxious upon hearing the word “chemotherapy” (and having lost his mother to cancer), this particular doctor told us that you could argue that most drugs used to treat issues of inflammation – even NSAIDs and Tylenol—were chemotherapies, and that what you really needed to consider was the severity of the drug in relation to the assault your immune system was wreaking on your body. The purpose of chemotherapy is to reduce cell division, to cut out the cells that are necessary to incur an immune response. B cells are triggered by T cells and it is the resulting inflammatory response from that process that causes the majority if not all of the symptoms of lupus. Steroids, chemotherapies, biologics, and other medications act on various proteins in the immune system, like B and T cells, to suppress the immune system in turn quieting the immune response to the extent that ideally the disease goes into remission.
I have been on many forms of what is referred to as chemotherapy over the years. Since there is no cure, there is a definitive system to how you are treated with lupus lessen the blow of SLE on the body. Your team of physicians considers the severity of your illness—the organs impacted, your quality of life, your lab results, etc.—and tries to pick the most benign medications that are likely to suppress the disease as it is manifested in your body. Immunosuppressive therapies, most commonly chemotherapies, are some of the only options out there to counteract the toxic environment your autoimmune system is creating, and as such the chemo is actually less toxic than the disease itself if allowed to continue to run rampant.
My treatment process was a little different because I am not a “typical” case, and because I have so much else going on aside from lupus. One of the first therapies my team tried was following the diagnose of a debilitating small fiber neuropathy that is autoimmune in nature—most likely but not definitively caused by lupus. The standard treatment for this is a steroid taper, which I failed miserably, and depending on how the prednisone is tolerated, Intravenous Immunoglobulin (IVIG) is administered. Instead of suppressing the immune system as chemotherapy does, IVIG virtually “washes” your immune system with the healthy antibodies of thousands of donors. In 2013, when IVIG therapy was more rarely prescribed than it is today and thus less monitored, I had two one week long, large rounds of IVIG.
Generally touted as quite benign, resulting in at worst a painful migraine along with hypotension, in my system the IVIG caused a severe hemolytic anemic reaction. My immune system attacked its own blood cells, and this rampant lysing caused a diverse and disastrous set of issues including jaundice, requiring multiple blood transfusions. Though my team is not certain, this reaction was most likely due to my blood type, although all of the immunologists I’ve since seen are still stumped on exactly why this reaction occurs. More cases have been reported since my event, and there is now a black box label indicating this dangerous side effect to be a possibility. In fact, IVIG can now be prescreened so that the batch you receive is free of the antibodies to which your own antibodies might react. But because I reacted to a therapy that is supposed to be well tolerated (and difficult to access during times of war due to its superhero-like cure-all characteristics), my already cautious team became increasingly more nervous in prescribing future medications, and as such has proceeded with extreme caution.
I would say the process is generally as follows, and your rheumatologist might pick up anywhere along this hierarchy depending on how much damage the disease has done: a drug like Plaquenil, an antimalarial that has had great success in lessening disease activity (as well as delaying onset of disease in at risk individuals) is one of the most benign and oft-prescribed drugs, is usually prescribed first, and if well tolerated may be a part of a patients drug cocktail indefinitely and throughout their future courses of treatments. next is a drug called Cellcept which was originally designed to lessen the likelihood of rejection in recent organ replacements and as such lowers the immune system. then comes Methotrexate, a more commonly known chemotherapy that acts as a disease modifying anti-rheumatic drug (DMARD), a class that Plaquenil and Imuran fall in as well. Imuran is a common lupus chemo that has more risk than Methotrexate, and actually caused another hemolytic anemic reaction (which at least we learned at this point is probably a noteworthy trend, especially after learning that my sister is prone to hemolytic anemia as well).
After these pill and subcutaneous injection forms of chemo have been exhausted, you head into intravenous chemotherapies. A recent FDA SLE approved drug is Benlysta, but this biologic (commonly referred to as a chemotherapy even though it technically is not) has a similar mechanism of action as a drug called Rituxan, and my team chose the latter for me because of my high reactivity, and because Rituxan has been on the market and thus studied longer. Surprisingly, despite some icky serum sickness, I did quite well through the entirety of the four week infusion process on the Lupus Rituxan schedule. Unfortunately the medication did not provide any statistically significant change in my lab work nor did it empirically improve a single symptom. Looks like that one is off the table!
Which leads me to where I am now, in a sort of holding pattern as we determine the next best step. Most hematologists and rheumatologists would like to see over a six-month period if there is symptom improvement in their SLE patients, and I passed that marker last month. As far as chemotherapies go, the next route would be a pretty toxic chemo called Cytoxan, with or without Plasmapharesis (PLEX). That’s on the back burner as we continue to investigate successes other lupus patients have had who have tried medications designed or reapplied to patients with other autoimmune diseases, most notably Rheumatoid Arthritis.
Currently my team is looking most intently at JAK-2 inhibitors, which are cytokine-specific and inhibit the activity of one or more of the Janus kinase family of enzymes (JAK1, JAK2, JAK3, TYK2), and interfere with the JAK-STAT signaling pathway, modulate gene transcription, and thus prevent the cells from forming that are responsible for the disease’s activity. Whereas chemotherapy knocks out your B cells so that they are unable to create the T cells that are responsible for the autoimmune response and inflammation, JAK-2 inhibitors are a bit more sensitive. Hopefully with my family history (my grandmother, mother, and siblings all have the same or similar genetic abnormalities, metabolic issues, MCAD, Dysautonomia and neuropathy, and are impacted by autoimmune diseases), we can find a drug that is best fit to our specific makeup and disease pathways. I personally have my eyes on the latest IL-2 inhibitors, or Interleukin 2 inhibitors, which are similar to JAK-2 inhibitors, but the enzymes they hinder are responsible for leukocyte production.
Long winded story short, there is no cure and that’s something I came to terms with long ago. I am hopeful that I will be able to find the right therapy that regulates my immune system as efficiently and safely as possible, though, and am not any more fearful than I need to be of the class of drugs that medication might fall under because of my awareness of what my body is capable of doing to itself before a cure is discovered. Whatever it takes to engender relief so that I can experience a better quality of life while protecting my body in the state that it currently is in is unfortunately a necessary risk.
F: I can imagine that this route of treatment cannot be easy. Can you tell us more about what positive and negative side effects (both emotional and physical) came from trying chemo for Lupus?
A: To be entirely frank, going forward with a treatment that might seem scary or might have a variety of side effects or long term concerns is not nearly as difficulty as feeling perpetually sick (and often as sick as many of these medications can make you; truly, many of the side effects are the same as the symptoms people with autoimmune diseases experience) with no intervention in sight. As each drug has come up in my journey, I have been wholly prepared for it. My symptoms, the degeneration of my body at the expense of my disease, my quality of life or lack there of, etc. is such that I go to those decision making appointments entirely prepared to make what might be considered a tough choice and in this sense, it doesn’t feel like that tough a decision.
Even knowing that a “big” therapy might fail is acceptable, because the alternative—to not act— would undoubtedly result in a state of questioning “what if?” that would be more toxic than living with the disease itself, having not attempted to treat it. It is, when coping with a disease ravaging every system of your body and every aspect of your life, peace of mind to know that you have left no stone unturned, that you have done every single possible thing available to make yourself better in fighting what ails you. That lifts a major emotional weight. Relative to those considerations, the side effects and the anxieties are manageable enough to deal with them.
F: As sick women, we try all sorts of remedies to help us feel okay. What natural treatments have you tried for Lupus and would recommend?
A: Lord, isn’t that the truth! I think I’d do just about anything if I had the slightest inkling it might make me better. I suspect that’s why many who are chronically ill become so offended by medical advice, especially of the unsolicited or triggering nature. I’d argue that all of us are devastatingly committed to feeling any bit like a human again. It’s certainly defeating when a medical professional suggests something to help you that you are certain is an impossibility. But when someone who doesn’t quite get your situation, however well-intentioned this person may be, makes a recommendation, it’s clear that they don’t quite understand what you are going through— that they haven’t really tried to see what you need on the level of true empathy— but also inherent in their words is a suggestion that you are either doing something that is making you sicker, or you are not doing something that could be making you better. You know that’s bullshit because you know you’d do anything, in fact if you haven’t tried some sort of alternative cure you’ve certainly read all you could about it. And that’s isolating. As if being chronically ill wasn’t isolating enough. By the time you broached with the questions “have you tried…” or a ridiculous suggestion, you’re far too exhausted by your condition and your endless attempts to make yourself better to meet their ignorance kindly. You can understand why it solicits a visceral response.
That said, I’ve gotten a bit of flack for suggesting yoga and meditation, and I get it! The last thing we want to hear is you need to exercise, or you need to think differently. But for me, having a practice (even for the MONTHS at a time when my practice consists of barely moving in bed and repeating the simplest mantras with a deep breath or two) is arguably the single most important thing that has kept me going. And to not say so at the risk of offending people who have rightly been hurt by repeated assertions that they just need to move or change their mind to feel better, would I think be a huge disservice to the people who might be just enough like me that they might benefit from a practice of their own.
My practice has engendered in me a sort of righting of my worlds: my rational brain with my emotional one. Two components of Me that fought and fought and fought until fairly recently. (Disclaimer: they do still fight. It’s just a little more bearable now, I have the tools.) And I suppose my point in all of this truly lies within the idea that whatever it takes for YOU to get the perspective YOU need to survive and have it at the ready for whatever comes your way is what is exactly perfect for you. It’s hard work to get there, and it might involve cooking or singing or reading or sitting outside for a couple of minutes or watching your favorite movie over and over or connecting with spoonies online or frankly just TIME, but whatever it is, my only wish for all of us if we can’t feel 100% “better” is that we find our voice and what soothes it and that we foster it and then we never lose it. (I like to say, Maslow would be proud of us spoonies.)
The treatments I try, whether they are mainstream or alternative and whether they ultimately work for my specific body or not, the response I meet each emotional pattern with; my relationships with loved ones and strangers and myself; being ill 24/7/365; all of the experiences that come with the territory of being sick and making it through to the other side as least scarred as possible is so entirely dependent on being okay with what’s between my ears that I just firmly believe that no natural remedy is going to even come close to helping you until you’ve got this seemingly basic (but what feels extraordinarily impossible) THING down. I a little bit (okay, a lot) believe nothing is going to work-- not even a real medical cure— until you’ve done this, because frankly to be sick means to go through a very real grieving process that is going to make you grow and know yourself better than you could have ever imagined whether you like it or not.
Don’t get me wrong I am by no means saying you need to make a sanctuary in your bedroom and your bathroom and your car with patchouli and a meditation pillow and you need to grow your armpit hair and braid it with beads and only smile at the adversity that greets you with a mouth full of coconut oil smothered kale. Hell, no. You may learn that the best way you deal with things is by shouting “FUCK THIS!” as loudly as possibly until you feel the calm return to your body and you feel able to continue on with your day. That can be what your brain and soul are all about and that’s fine. You have just got to be aware of that piece of you before the healing comes and sticks, no matter what kind of healing it is.
Also, I take a lot of vitamins because of my genetic issues and I probably would die if I didn’t, and since most people consider that “natural” in nature, I’d be remiss not to include it. Oh, and I don’t wash my hair too much (like, I go weeks at a time, which was I process I had to train my tresses to be able to accomplish) and that’s greatly helped me spare some hair loss as well as save some spoons each day. And, I keep an open mind. If I hear of a treatment that sounds benign enough, with no contraindications, I’m usually inclined to try it.
F: As someone who lives with a compromised immune system as well, I definitely know how tricky it can be. What are some coping methods to help you balance your every-day life?
A: Unless undergoing treatments that are immunosuppressive in nature, I’m not actually all that immunosuppressed: or at least, that’s not the immune system concern I have when going about my day to day life. The compromise I experience is that my immune system is so heightened and overactive. Of course, this is the very definition of an autoimmune disease. My immune system is so dysregulated that it uses its abilities beyond simply determining what is foreign or dangerous and then attacking that, instead attacking itself and wreaking havoc wherever it does so. This is why therapies are targeted toward quieting the immune system in lupus and other autoimmune diseases.
A healthy individual is able to cope with mild germs regularly and easily, without incident. They might not become ill at all. Not so for the lupus patient. Even the weakest virus or bacteria can elicit such a heightened response a person with SLE might become quite ill, even requiring hospitalization. The hyper-vigilant immune system is not able to distinguish the danger of foreign cells, thus unleashing a chain reaction of inflammatory responses that can be disastrous for the patient. This is why infectious individuals are so dangerous to someone with lupus, and why infections are so deadly to them.
To cope with the fact that I want to be as active a member of society as possible but also spend as little time in the hospital as possible, I find I have to strike up a balance—and one that’s always evolving— in order to allow myself some sort of public social life. I try to make it patently clear to friends and loved ones that they need to let me know if they are sick prior to seeing me. I’m the whacky lady on the airplane you sit next to that is wiping down everything on and around her seat that she can wipe clean. I wash my hands, a lot. It’s like I’m constantly wearing germ-radar glasses. I don’t simply find public restrooms unsanitary, I’m making sure I’m mindful not to touch my face after being in the grocery store, on an escalator, after signing something with someone else’s pen (especially at the bank).
Aside from such preventative measures, I’ve not found a real way to live in the world like a somewhat normal person and avoid all immunological hazards. No amount of vitamin C or L- Theanine has helped me stave off communicable illnesses. I just try to do the things I can to help my body (eat well; take my medications; take my vitamins and supplements; engage in as much necessary self care as possible, like massages and Epsom salt baths; etc.) and hope for the best. Keeping in mind the knowledge that getting an infection is inevitable, not just during flu season but year round, and I’ll just have to take care of myself when I do.
F: What has been the biggest thing you've had to accept about being chronically ill?
A: I’m not sure that I’ve ever been dealt one single blow, or had to reconcile one single tenant about being chronically ill that’s been harder than any other. And I think there’s a few reasons for this. I’ve always been ill. I don’t know any other reality. When I talk to people—including my best friend, who became quite ill with a rapid and acute onset illness in her 20s— and they ask how I do it, how I deal, especially because this demographic of people rightly feels so defeated and weary, I have to point out that this is all I know.
I am by no means minimizing a life of illness. It hasn’t been easy. I do not wish this on anyone, not even my worst enemies. I’m not going to sit here and lie to you and tell you I’m glad I am sick—that I’ve learned so much, that it’s a blessing in disguise. That I can’t imagine having any less empathy than I have at this point in my life. That I am who I am because of having these chronic conditions. That this is the path put before me by the universe, by some higher being. That I am right where I am meant to be. That all may be true, but I’d like to think I’m committed enough (and autonomous enough) a person to have wanted to pursue my personal growth without such ardent and endless adversity. The silver linings are apparent to me-- I do lean on them to help cope with chronic illness-- but I was not put on this earth to be anyone’s disability porn. I am a person, trying to make it through each day like everyone else. I have to believe my purpose extends beyond the pain and suffering and takes flight with my intentionality, not my appearance or ability to inspire.
Unlike people who develop illness later in life, I did not need to mourn an ambiguous loss of self. I grew up with my diseases and disorders, like a really weird, not awesome best friend (or maybe, more aptly, parasitic growth). Who never left my side. As such, as I matured and approached various developmental milestones, I met them with illness in tow. Each phase of age-related enlightenment, for lack of a better word, on my journey to being an adult was unconsciously and intrinsically tangled with what it means to be sick, chronically.
Let me try to exemplify that better. As a child, playing sports, I learned what my body could or couldn’t do on the field not just by the limits of my physical body or mind but by the limits of my aching joints, my asthmatic lungs, my being prone to injury and illness. I also learned at a young age that I couldn’t do what my friends did, which evolved as we aged with age-appropriate activities. I couldn’t pull an all-nighter and not be wildly unwell the next day. I couldn’t go to school every day— some days I couldn’t get out of bed, one year I spent over 100 days in bed. I couldn’t wake up without vomiting (or sit in the car, or smoke a cigarette, or drink a lot of caffeine, or… the list goes on, and involves a lot of vomit). I couldn’t save the weekends for my friends, I had to save them for recuperating from the week of school. I couldn’t drink without throwing up, and I couldn’t get drunk without having the worst, week-long hangover afterward. I couldn’t eat whatever I wanted, whenever I wanted. I couldn’t stay on my college’s campus with the friends I had made and loved. I can’t live far from my team of doctors, nor away from the intimate care of my family that sometimes must feed and bathe me.
I can’t work, not even part time. I can’t claim myself an independent. I can’t imagine planning my own wedding, let alone attending it. Most recently, I am learning to get comfortable with the idea that I may not be able to have and raise my own children. My last OB/GYN appointment, at which point I was told she highly suspected I had endometriosis, would have been a tragic affair if my physician wasn’t so compassionate, funny, and motivating-ly hopeful. Would I be able to come off of my medications for a pregnancy? Would my immune system be able to handle the postpartum period, one of the hardest aspects of childbirth for lupus patients? Even if I am fertile, and we aren’t remotely certain that I am, a lupus pregnancy is one that is exceptionally high risk for a variety of reasons including the frequency of miscarriages. If my baby and I could survive the pregnancy, could I care for a newborn? Could I if I adopted? As it stands, I am incapable of caring for myself.
This has been exceptionally hard to reconcile. Not the most hard, but it does stand out. My supportive and loving boyfriend does not give me the option to choose our relationship’s fate over my illness, but it is hard to imagine a future without children when I was born with untamable desire to have all the babies. His babies. I may not be clairvoyant, but this also isn’t the future I would pick for someone I love as much as I love my partner. Perhaps what’s most devastating is bearing witness to the unfair facts my loved ones have had to accept, based on my illness, that to me are simply the circumstances of my life.
F: What do you think is most misunderstood about Lupus?
A: Until Selena Gomez made public her experience with SLE and Toni Braxton approached the stage to share her own battles with lupus, I’d say that there was pretty much no misunderstanding to lupus. Lupus was absent from any public discourse of which I was aware. There was simply no understanding that I saw, especially outside of the chronic illness community. To be completely blunt, there’s a lot of misinformation within the lupus community, which I think is a trickle-down effect of poor education on the part of physicians. No one knew what this disease was, despite it affecting so many—including men, like Nick Cannon (who only this year referred to his disease as lupus instead of lupus-like). It’s tricky to diagnose as a disease that is such a great mimic and manifests so many different ways. A diagnosis requires a ton of time, energy, and self-advocacy in addition to seeking the guidance of specialists, which not a lot of people are able to do for a variety of reasons. With people living lives without knowing they are sick with a known disease, it’s no wonder there’s so little awareness. We don’t have all the members of our choir to sing loudly about what lupus is.
I think the greatest disservice in terms of misunderstandings occurred after Selena Gomez emphatically corrected the press on her stint in the hospital, having been incorrectly ousted as spending time in a rehab facility. When the masses read and heard the word “chemo” without understanding the disease, perhaps having never heard of the disease nor considering its aggressive and debilitating nature, a wave of ignorance crashed over the masses that I hope we can undo with persistent advocacy, including Gomez’s later explanation that she needed to take a break from performing to eradicate the anxiety and depression that is a devastating complication of lupus as an intensely necessary act of self-care.
The misinformation began benignly enough: one reporter must have taken it upon themselves to engage in the most preliminary of Google searches and saw that aspirin is listed on some outdated websites as a treatment for lupus, and spun the article so that its readers questioned why she would be using a medication meant for cancer patients if all she needed was a Bayer. This idea took off, with a nasty conversation over Selena Gomez’s very educated and very personal decision to, for lack of a better word, “fight fire with fire.” As so many of us are forced to do.
Many years ago, aspirin was used as a blood thinner to treat patients with blood clotting and coagulation issues. Especially for patients who are pregnant. It certainly was not used to tackle the systemic and punishing pain lupus patients experience, nor as a treatment to calm the immune system. It was more or less seen as a benign add on, particularly when even less was known about lupus, and this medication is rarely recommended today by leading specialists. The lack of research on the editor’s part perpetuated an incredibly dangerous idea that lupus is benign. That it is easily treated. In denying Selena’s very real and very traumatizing experience, this backlash caused people to question the severity of others’ disease progressions, to minimize their pain and suffering, to dismiss their disability. Instead of shedding light on a very real and indeed a potentially deadly disease that is underfunded, the article took Selena’s voice and twisted it into a device to discount the over five million people worldwide suffering at the interminable grips of an incurable illness.
F: You talk in your blog about the long diagnosis process you've endured in your journey of being sick, so many times not being able to even get a name for what you were dealing with. How did you handle that frustration of the "unknown"?
A: Perhaps it was a training of sort. All of that unknown built up to this giant mysterious diagnosis of SLE which is defined by an extreme variability and what I like to call “the unknow-able.” Maybe I was able to handle a disease marked by so much mystery because I was used to living a life marked by mysterious symptoms and illness. And, at least I finally had a name. There is power in knowing what to call what hurts you. It gives the monster a face that you can look directly in the eye as you fight it.
But if I really was to be honest, I think I handled the frustration of the “unknown” because of my mother. She has been relentless since I was an infant in searching for, if not a diagnosis and a cure (although that’s always been her ultimate goal), a way to make me feel better. To treat the symptoms to improve my life. I have rarely felt despondent over my future, over my inability to predict the future, because of the manner in which my mom approaches me and my health, as she does all things. With orthodoxy and with generosity.
Without minimizing the frustration, the unfairness, the fact that so little is known or can be done, my mama’s determination is such that it leaves very little room for being upset for too long. Of course, she is a huge proponent of allowing every feeling along the emotional spectrum its space and voice, but she provides the comfort necessary so that I feel safe while I am experiencing the harder emotions and offers a lifeline when I’m ready to return to shore. Even if I can’t pick myself up and carry on, she is there to do so no matter what else is going on in her life.
My team has mentioned before, often to my embarrassment, that I should be proud of myself for how I handle my illnesses. As extensively sick as I am, citing their other patients who do much worse than me despite similar or less disease activity, they suggest I should recognize the work I’ve put in to be in the position I am. But, like Abraham Lincoln said, “All that I am or ever hope to be, I owe to my angel mother.” When someone is in your life like my mother is in mine, not just as a support or as a role model but as a physical AND emotional caregiver, any emotional response you may feel in response to the frustrations of chronic and incurable illness is dwarfed by the amount of love, compassion, strength, and steadfastness directed toward you. It’s an amazing and beautiful thing, and another exceptional attribute of my own angel mother’s to which I will forever be indebted.
Despite her own aggressive illnesses including systemic Rheumatoid Arthritis and the equally aggressive therapies she undertakes, despite caring for a large family with varied and time-consuming health issues, despite any and all concerns that inevitably arise when a mother, a wife, a mother, a woman, a human. Every morning, she gets up and greets the day with the same resolve. Each day she cares for me as if it is the first day of my illness. As if I am the only person in her life. (As my grandmother points out, she has a remarkable ability, along with my father, to make all five of us children feel like only children which seems like straight up sorcery to me.) Week after week she goes about her life with grace and humor, with commitment and extreme capableness. For me, there’s no room to do more than acknowledge, respect, and move on from the frustration I might feel in honor of a love like that.
F: That is so wonderful that you have her, I could go on and on about how I would be nowhere with my illness if it wasn't for my mother, as well. It is probably one of the most important things when you're sick, to have someone, anyone, that can support you like that.
Alyssa, I wanted to thank you so much for explaining more about chronic illness's and Lupus. I admire your outlook you have towards your illness's. And as we wrap up, I wanted to see if you have any advice for anyone out there struggling with Lupus! Also, keep making that lemonade, girl!
A: You are so sweet. I appreciate your interest in my story and the platform on which you are sharing it. We may not be able to eradicate all that ails us, but in talking about it we certainly can change its condition. The texture. I’d have to say to others dealing with all that is dealt when lupus is in your hand: Don’t be afraid of the struggle, my sweet Lupies. Hate it, admonish it, realize how unfair it is, but don’t you ever for a second let yourself think that the fact you almost break makes you less strong. That is not weakness. Bravery sucks. It does. But no matter how you get through your day, you are getting through your day. And there is strength in that, there is pride in that. Magic, even. Despite tears, or because of them. The curses, the ugliness, all of that is the grit that is the evidence of your power. You did that. That’s yours. Only yours. Own it.