Lupus and I, an Awesome and Fearless Rock Story

The chatter of the public is getting warmer and more intense. Background music and laughter are mixed with words that take on ever-higher tones. Everything arrives a little muffled on this side of the stage, and I still do not see the faces, but it is clear they are happy, serene, energetic, and ready faces. I must be prepared too. Beside me, Ari widens her eyes every time she meets mine and clutches her violin in her hands. This is how she communicates her pre-concert tension: she is excited, like me. I love when she looks at me like that. I know her as I know myself, and I see clearly in her gaze that she sees no weakness in me at that moment. I am her iron support. I love when she looks at me like that because it makes me feel strong. I smile at her and wink, “You are my favorite violinist.”

I wear my guitar, my “Mistress,” an electric one with impertinent horns. It always weighs too much for my body; for a moment, I think about the inflammation pain I will feel the next day, but I know it, and that is okay; at this moment, I do not care. Now I am strong; I feel strong. I feel so strongly that the guitar almost seems to lose weight. Ari’s gaze following me as I climb the ladder confirms that I am strong, bolstered by the excited faces I begin to see with every step I take – they are ready for us. So am I. The lights go down, as scheduled in our datasheet. I love stage lights; they frame the sound emotion –  irreplaceably. I love them as much as I fear them. Summer, Winter, day, night, outdoors, indoors, I always need sunglasses and those with the highest degree of darkening.

Photophobia always keeps me on the verge of headaches and nausea. Ari sometimes jokingly tells me that I would need black leather lenses. She is right! If I am not careful, I risk dizziness and minor breakdowns, and the inevitable big headache with related nausea that will come later, but at that moment, I do not care. I start with the lowest note that sustains everything. Now I am strong and want to taste and feel it all. The lights are soft, the audience holds their breath, and my pickup is responsive. I am the fortress.

Ari enters the stage as she only knows how to do, behind me, lifting me up. I love starting concerts with “The Fortress”; it wakes me up from weakness to take me to a state of majestic energy that makes anything possible. After it, any rhythm, play, and exchange of notes and intentions is pure energy and fun, and this energy is contagious; it is a single vibrant string that connects all the people in front of us – and us.

The adrenaline of the performance merges with the effect of cortisone, and I no longer feel the inflammatory pain in my fingers, which move freely on the fretboard, getting warmer and warmer. Much of the pre-concert tension comes from the cold. There is rarely enough warmth for my hands before any performance. I lose sensitivity quickly. Yes – Raynaud’s Phenomenon. Finding myself playing without sensitivity to some fingers is one of the things that scares me the most before concerts. It could compromise the quality of our performance and, in the worst case, could interrupt it.

I developed techniques to keep my fingers “alive” right before a performance. I have done well so far. After the concert begins, the enthusiasm that increases from song to song leads me and my heavy guitar to trample over the entire stage, and I warm up more and more, getting better and better. The lights also come alive as the concert progresses, but it does not matter to me anymore. I do not think about how I will feel after; I do not care because it is more important to be strong right now. I do not always have to take cortisone, and I consider myself fortunate. I can add it to primary therapy only when inflammation compromises the movement of the affected joint, sometimes hands, feet, shoulders, or other parts. But I am lucky; it takes relatively little to put things right, or almost. 

Since I was a child, I have been practicing martial arts, and now it is more apparent that my health deteriorates when I do not train. Constant physical exercise helps my body to be strong. In martial arts, the ultimate goal is to have full awareness of oneself and one’s body so that every single movement and breath is as precise as you decide it should be. Attending a martial arts competition, performing ballet, or giving an excellent musical performance have the same thing in common: the perception and awareness of how and why every single inch of our body is moving and if this perception fails because of weariness, then the meeting, the ballet, the solo will lose tone, and a blow is received; the balance is lost, or the melody loses vitality. That is why I train constantly.

Ari and I change positions; the intersection of melodies corresponds to our places on the stage. I pass in front of her monitor and hear the low frequencies my fast picking produces. I think, “these frequencies are beautiful, heavy, like my Mistress.” I still move, I love walking while I play, but I stop now and then. I should train more.

As often happens with this type of disease, for each person, it is different, and in each period of life, it is different. I always conclude that I am so lucky, or at least I have been, until now, because I know it could be a lot worse, and I do very well. I have changed doctors, therapies, routines, and my perception of the disease several times. One way to help live a condition well is to say, “You are not your disease.” I understand that the intent is to make the sick feel something more than a sick person. They want to say, “Hey, you are a person who has to live life, do not get stuck behind your illness.” And this is certainly right.

However, I believe I am also my disease, to a large extent. In the first few years after being diagnosed, I acted like I did not have Systemic Lupus. I did not tell people I had it and did the things I had always done and saw others do without trying to adapt them to my situation. Conditions like these, which accompany one’s daily life and force you to adjust your choices, actions, and relationships, are so pervasive that I think it is useless, if not harmful, to pretend to “separate” them from yourself.

I did not voice it – not because I thought it was something terrible in itself, but because I felt that nobody would understand or care, that it only risked weighing down the atmosphere, and that it took more effort than it was worth to explain what it was and why it compromised my activities. So, if friends organized a lovely day at the beach in the heart of Summer, I went along with the manner and timing of others. If we were to meet during a Winter evening to chat outdoors, I would go, then deal by myself when I lost the sensitivity in my feet and got ulcers. I dealt on my own with all the skin and systemic complications when I returned home, or if the conditions made me risk being sick, I declined the invitation.

On days of asthenia or general weakness, depending on the extent of the same, I assessed whether it was the case not to participate in anything without giving too many explanations or whether to do it anyway, even knowing that I would be feeling miserable despite myself. Then, partly because the disease got worse – therefore, it was no longer so easy to deal with by myself – and partly, thanks to Ari, I realized that I was not living well, but I was living at the mercy of outside influences. She taught me that “what you can do to get better, you should do it!” It is such a simple concept – yet, I did not.

Keeping up with all the annoyances caused by Lupus takes time and energy every day, and when you are short of energy, the risk is to give in and drag yourself into discomfort. Instead, the awareness that I am also my illness helps me manage my daily life and projects with the naturalness of how this life can be. And it is beautiful! Are my salivary and lacrimal glands not working? Well, I always have water and artificial tears with me. Do my joints become inflamed? Ok, if I have to work, I get help from cortisone; if I do not have to work, I try to be more involved at home and try something local, and if that is not enough, cortisone. Do my friends go to the beach in the middle of the day? I cannot, they understand perfectly, and we meet at sunset. In the meantime, I will do what I like. Vacation photos? All cute in a bikini, and I am (good on who recognizes me) dressed as a Bedouin.

There is always an opportunity for a good laugh when reviewing the photos! Do I feel bad, perhaps in a period of neutropenia? I book an appointment with the doctor, and we evaluate together what to do, and I let myself be pampered a bit (by Ari, not by the doctor – mild chuckle). Do I spend many days of the year on visits, analyses, samples, and pharmacies? I make myself comfortable in the waiting room with a new book by Ken Follett (with my sunglasses). I am lucky to make the trip with Ari, who always accompanies me willingly, and we get distracted by thinking about creative things. When I feel weaker, she continues chatting more (and trust me, she is comfortable talking!) And that is okay. What I mean is: yes, I am Eleonora, I am a Sardinian girl, I am a physicist, I am a musician, and I am a martial arts instructor – but yes, I am also a woman with Systemic Lupus, and while we are at it, Sjögren’s.

If I put it on track with the other things about me, I will be able to integrate it with everything else. Otherwise, it will remain that which will always try to slow down – from the outside – all the other things I am. That is why I do not think twice before telling people: I will not do things this way because I have Systemic Lupus, and it is important to me to do it this other way. Or even though we are indoors, keeping my sunglasses on saves me a headache and nausea for the rest of the day? I keep them on, and who cares if anyone thinks I am crazy or that I leave them waiting? When I train during Winter, I end up with foot ulcers, but that is okay; I train anyway; my training partners make me feel at ease because they are also my friends, and at 32, I have complete power over what environments to live in and what kind of people to surround myself with.

Those who are wary because I wear sunglasses or do not do shenanigans on the beach at high noon are not the friends it makes sense for me to hang out with. But above all, there is Ari. I know her pre-stage eyes so well, the ones where I am the fortress; they are the same eyes as when we trained together in martial arts; those eyes are her fortress, the same as when I gave her the nebulizer for her asthma. I know them as well as those eyes that say, “I pity her” (in a good way) when, as her grandmother says, “you live by the skin of your teeth.” Oh, how much we laughed when her grandmother described me in those terms! The truth is that everyone has their difficulties and their ups and downs, and when these difficulties cannot be solved, the difference is made by how we decide to live them. This is how I decided: I am strong when I have to be strong. Everyone is strong when they do what they do best.

Ari moves from the center of the stage to make room for me. The refrain reaches its culmination, and everything stops for the special. I start again from the low notes, and I go up; I go up again and again, my “Mistress” follows me, and the audience lets itself be carried away by the two of us. I know it is not always that easy. For a woman my age, there is also the issue of pregnancy, which can be a delicate moment in some instances of Lupus. “It is advisable to become pregnant in remission from the disease, carefully evaluate any suspension/modification of therapy, etcetera, etc.”

In short, the disease complicates things further if everything is a bit complicated. In my case, frankly (who knows, maybe because I am so lucky), if by now I have accepted that I have to commit myself to adapt my choices to my state of health, I still find it very difficult to get that it is human wickedness that limits the possibilities of my life. Yes, I am a woman with Lupus. If I wanted to become pregnant, being another woman to become the mother of my children, I would be faced with a double obstacle: on the one hand, I would risk complications from the disease; on the other hand, even if the pregnancy were to be successful, I would find myself fighting against homophobic malice to try to have the rights of my daughter/son be recognized. I am ready to compromise over Lupus and prepared to do so with serenity. But I am not prepared to do so on human wickedness, no. No compromise, no justification.

The lights slow down; it is an acoustic moment; I drop my pick because I have to play harp harmonics – my eyes and Ari’s are seeking one another; I feel the weight of the guitar on my shoulder, but my gaze is up, and it never strays from Ari’s eyes until the end of the piece. My arpeggio in D minor accompanies the long arch on Ari’s violin; I have time to think: “Thank goodness she is here,” and the D minor becomes a D major. The lights go down again (my eyes are completely open), and the audience applauds. The people are fantastic; they do not care how or why; they enjoy the moment as it should be. They are okay with me being me.

We love to finish with a burst of energy. It takes a cue from a mashup with great classics but in a crossover style, as we like it. Medley AC/DC, I love that “Back in Black” intro. The guitar’s weight disappears; I can only smile as I play it. Ari enters, and it mashes into… Thunderstruck! Ari’s violin is fast and precise; I love to keep her rhythm by playing low notes. At the transition, we reconnect our gazes, and off we go. Paganini! Tension is high on the finale; the lights follow us; I close my eyes and reopen them only for the final note, the one in which I look at Ari, and then together, we look at the audience. Ari. The public. They are my fortress.

Enjoy life, folks, even when you live “by the skin of your teeth.”

Much love. Rock on!

16 thoughts on “Lupus and I, an Awesome and Fearless Rock Story

  1. I have been exploring a little bit for any high-quality articles or blog posts in this area. On Yahoo, I, at last, stumbled upon this site. I am happy to convey that I have an excellent, uncanny feeling I discovered just what I needed. I will certainly make sure not to forget this site and glance at it regularly.

  2. [Translated from Russian – Thank you, Misha] I am 53, a mother of three, SLE. Your story made me weep. So much truth and so much courage. Hold on to strength, Eleonora. I love your music 🙂 P.S. Not all humans are “wicked.” Toma

  3. [Translated from Russian – Thank you, Misha] I shared your story with many friends. I have had Lupus since I was small and was always ashamed of my skin and my sores. I still have anxiety about showing myself. Your story and courage made me think, and I believe soon, I will be able to smile more and go out more often. Thank you, Katja.

  4. [Translated from Arabic – Thank you, Nasir] “Always remember that your resolution to succeed is more important than any other” is a quote I live by. Be strong. I’m pleased to meet you through your story. Love yourself like music. Thana x

  5. [Translated from Chinese – Thank you, Lai] May your luck be as immense as the Eastern Sea! Your story is frank, and you have great courage. Love, Lei

  6. [Translated from Chinese – Thank you, Lai] My father-in-law says, “When the winds of change blow, some people build walls, and others build windmills.” Reading this, I think you are a beautiful windmill 🙂 May you have peace wherever you go 💚 Xiuying

  7. [Translated from Arabic – Thank you, Nasir] I am 42 and moved to Italy 20 years ago. I have SS-SLE. I make paper paintings and paint in Kufic. My hands are often numb, and I cannot do as I wish. I had two miscarriages. I understand your worries. You are right, “human wickedness” is today’s worst enemy. Today I held you in my heart, and I will continue to do so. Thank you for your courage. I walk taller. Djamila

  8. We are the same. At 63 I have had a life full of ‘stuff’ also. In 1992 a friend asks of myself as dealing w / a divorce in progress. Thanked him & said that I was loosing a great deal of sleep as I could not find answers for the questions I had. Jerry said that a book of my life is being written for me & that it will answer all of my questions. I asked when I would get that book. ‘On your Judgement day Mike’. Jerry did suggest that to relieve stress now I should start to ‘run stairs’. The next day I did 7 floors. 24 stairs per floor. 148 stairs. It hurt bad but as time progressed job locations did also. I was working @ 1801 California. 2 flights per floor, 12 stairs per flight. 1,248 stairs from ground level to 52nd floor in 11 minuets. Now comes April 04, 1998. Was riding my bicycle & I was hit by a drunk driver. Spent 4 weeks @ Denver General Hospital & was taken from there to Craig Hospital on April 30. I was @ Craig for the next 18 weeks & was completely released Sept 18,1998. Returned to work in late January 1999 & I Retired from US West May 28, 1999. In 2000 I was hired by a Retail Company & I had explained all to them as I could only earn so much per $$ per month. Jerry was my friend, my co-worker, my ATA Sensai in the past. I am uncertain of myself, I have questions of myself. So in 2000 I again attend ATA Martial Arts. Attended class 4 nights a week & spent the other 3 days working on my forms, sparring, & weapons. I made 1st Degree Black but I left ATA in 2003. I started riding my bike (crazy as I had been hit as riding) in 2003 to / from work, grocery store, Church, anyplace I chose to. I retired from that Retail store in 2017. As time progressed I have been hit by cars 4 times, have had damage to self from each but I can still walk, talk, play. Should have done what Ari has & spent the time on my violin that I have on my bike. Your ‘Mistress’ has 6 strings. Mine has 9 gears. Was given ‘shtuff’ by many for many years. NEVER allow any comments made to you to offend you in any way. Run stairs, ride a bike, kick some tail any way you can but NEVER allow others to harm you. You will always be a WARRIOR. Always. Remain a WARRIOR.

  9. Thank you for sharing your story. I read it over many times. You say many things that I can relate to. I am 39; I have SLE-sSS. I am a woman, a wannabe mother, and a civil engineer, Sa Bum Nin; I don’t have a musical bone in my body. I always refused labels; I loathe them. You gave me food for thought, it’s time for me to be as strong as you. Justsabi is a great blog, very different, why I like it. She’s right, we can be part of a choir that makes a difference. I hope she’ll publish my comment. To you Eleonora: thank you for helping me find my voice. You rock 🤘
    Kath, living in Billings, MT

  10. What a beautifully written story!!!!! I couldn’t think of writing something this beautiful without getting all nervous about it. You’re an inspiration, Eleonora Loi. Thanks!

  11. I loved reading your story. We have many friends that are immunocompromised. Some of my Navy buddies have to navigate that on top of their PTSD. Hard to talk about for sure, but Eleonora, you set an example. Many people are fast to criticize and put people down for what they deal with, but I think they’re intimidated by their power. I laugh their comments off. Love, rock, and tell them to grow up or shut up. Btw, Back in Black is awesome, but don’t forget You really got me by the Kinks. Love you, kiddo

  12. I’m sitting here crying, but I’m not sad. I’m smiling and bumping fists with you, Eleonora. I have SLE, and I am 33; I’m a hobby drummer, a mother to an amazing daughter (I feel your concern), and I felt judged my entire life for my looks, shades, and choices. You’re right; we’re strong; we rock! Out into the light (with shades), yeah! Layla

  13. Vorrei che Neruda fosse vivo, mio amico, e qui con me : Pablo! Componi un’ode a questa Bellezza e a questo Amore.

  14. Wow Ele that is why you are so special for me, love it and your music

  15. Ele

    I get ‘living by the skin of one’s teeth’ … I do too. 😎

    Thank you for sharing your thoughts about your daily life & the real you, Ele – yes the smiles say much, your music says even more.
    It’s hard to ‘be’ the illness/condition … when we are so much more, for sure.
    But you expressed it so beautifully and make me, for one, UNASHAMED to be who I am – health challenges, pains, contradictions, struggles and all.

    I LOVED this piece. It made me cry & smile all at the same time – duality & complexity of life.

    Thank you, Sabi for putting it out there for all to ponder .. sure makes one think & question … from our hearts and souls. Grazie mille, ragazze!

    Lynn, London (UK)

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