I Lost My Cousin to Lupus

Karen Quiñones-Axalan
Posted February 16, 2018
My wedding day with my cousins. Kevin is second from left.

Today could have been his 31st birthday, but lupus prevented Kevin to celebrate another year. This autoimmune disease overtook my cousin on this race called life.

Three years ago, our family learned that lupus was the reason of Kevin's weak immune system. I knew him since he was a baby. He was the third of four siblings. Among them, he easily got sick. There were food that triggered his allergies. He needed to shift into a healthier lifestyle, yet he remained sickly. His gout got worse. His chickenpox that was all over his body took a longer time to heal and were larger in appearance. It was puzzling until a series of test revealed a label to his condition: lupus.

Lupus is the simple term for systemic lupus erythematosus (SLE). Itis a disease in which the immune system incorrectly attacks the healthy tissues of the body. The main functionof the immune system is to protect our body from toxins or foreign agents. With lupus, the immune system blindly attacks the body's "allies".

Ninety-percent of lupus patientsare women.However, it is more chronic with male sufferers.It is a widespread disease, affecting around 5 million inthe world, and yet, only few are familiar about it.

Lupus is considered to be"the great imitator" because its symptoms copyotherillnesses. It is possible that a patient might be misdiagnosed with diabetes, heart problem, kidney failure, HIV or cancer, but he/she isactually suffering with lupus. It is quite alarming too that it takes years to discover this damaging culprit. In some incidents, a patient is already aworse condition when receiving adiagnosis. Perhaps such was Kevin's case.

Lupus added swelling of his kidneys (nephritis), legs, and face. It paralyzed half of his body, with skin lesions andcomplications of pneumonia (inflammation of air sacs in lungs).

Lupus is a mysterious disease. Kevin would losea lot of weight, then he'll gain it more later. There were times he looked sickly. On other occasions, he appeared well. One thing was consistent: the endless trips to the doctors' clinicsleading to hospital confinements.

Kevin once joked he can already write a review on every medical care he went through. That was our kind of lupus fighter: lighthearted, considerate and brave. He was optimistic that he will recover. His dreams were big. He wanted to write a book about his lupus journey. I was among his cheerers. I believed him, in him, with him.

There is that scene that you see on the evening news whenever a parent, a loved one or a friend face the suspect of a grievous crime committed tothe victim they love.The person related to the victim, of homicide or murder for instance, violently attacks the perpetrator in an uncontrollable rage. That strong emotion is fueled by the pain of loss; an indescribable woundthat seeksjustice by wanting to inflict agony to thesuspect.

Whenever I see that scenario, I emphatize withthat pain of rage, of loss, and of helplessness of neverseeing your loved one again. The rage is acceptable,because even if death is inevitable, no one wishes to experience an unexpected goodbye.

Then there comes anintangible suspect calledlupus.

If lupus were a person, it would be easier to release anger to it. One could express his/herrage in words that could cripple a soul, or like the scenario above, through a physical attack that could cripple a body. But lupus, figuratively and literally, has no soul.

My first week of a promising 2018 found me in Kevin's wake, together with the people who love him.His passing came into a shock;there was too little a time to process it. I confess anger was my initial emotion.

I was angry atlupus, the invisible stranger that deteriorated my cousin's health which eventually stole his life. If this were a duel, it was easy to complain tothe refereefor lupus is not a fair opponent.

Up to this day, no one can trace when, how and why lupus entered Kevin's body. I am only a cousin, yetstill his death stings my heart. Imagine the pain of his mother who witnessed day in, day out the suffering of her youngest son.

On the final viewing of Kevin's body, everyone was moved into tears whenhis maternal grandmother wailed, " Apo ko!!! (My grandson!!!). She cried with her arms spread onthe glass of his casket, the barrier that prevented her to give Kevin her final embrace. After that sorrowful release, she went to Kevin's mother to hug her, and together with her other daughter, Kevin's aunt, they embraced and cried together.

A few minutes before Kevin's body was removed from its white wooden box, I witnessed the most heartbreaking cry of a mother's farewell to her beloved son. Her tears flooded the casket's glass as she wept, wanting to hug her young man. To thelifeless figure, she repeatedly spoke the words,"Anak ko...anak ko..." (My son...my son).

She fought this battle with Kevin. She fought because she believed he would make it. She spent the last centavo in her pocket to provide him the best medical procedure available. She remained strong all throughout the insurmountable challengesbecause there was no other option but to be. She would have given her life in Kevin's place if she could. But reality gave her a different ending:her brave lupus warrior becamelifeless.

It was a still moment for everyone: the mother's last goodbye. I silently cried in the corner while I carried my then 3-month-old son as I watched my aunt lamenting over her once 3-month-old son.

I write this piece to raise lupus awareness. This is my gift for Kevin on his birthday today. I once wrote an inspiring eulogy for him where I shared the beauty of Kevin's life and how he won this fight with faith. There are too many anecdotes and lessons to share; hence, Kevin's life is worthy to be written into a book.

But this piece shows thepainful side of the story: lupus is a tricky murderer. Of life. Of dreams. Of hope.

Lupus, like AIDS, cancer and other chronic diseases,is something to be taken seriously. I am calling for support for lupus patients across the globe. They need our help. They need financial support for possible remissions. They need our encouragement.They need our love.

Comments 7

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  • Olutosin
    Feb 16
    Feb 16

    Oh I weep with you too. I can picture the scene. The pain. The helplessness. The tears. May his soul rest in peace. May the Almighty grant all his family members the strength to bear this loss.

    I aleays pray that cure be found to these sicknesses without cure ravaging our world. Sorry dear sister.

  • Thank you for your love and emphathy, Olutosin. I am really honored that you take time to read my stories.

    Grief is really part of life. Kevin's family is grieving but they are resilient. They let Kevin stay alive in their hearts...in our hearts. We are at peace when he died. He fought so hard; he can rest now. 

    His death was a peaceful passing. We know he is in a better place now. 

    I hope people will learn more about lupus. It is possible that a person is already suffering the illness but is misdiagnosed because it mimics other diseases. It is only when the patient undergoes a lupus test that he/she is diagnosed.

    In case you know someone who is suffering an incurable illness, consider taking a lupus test, she/he might have it. This post is about raising awareness. 

    Thank you again!

  • jlanghus
    Feb 17
    Feb 17

    Hi Karen. Thanks for sharing your story about Lupus. Sorry for your loss:-(

  • Thank you for your empathy, Jill. The grieving comes and goes. We miss Kevin, but we believe he is in a better place now where he can rest; a place where lupus cannot touch him anymore.

    This post is about raising awareness. In case you know someone who has an incurable disease, like heart or kidney problem, and are not responding well to the medication, there could be a probablity that she/he is suffering with lupus. Only a lupus test can confirm the diagnosis.

    I did not know about this until Kevin had lupus.

    Thanks again, Jill!

  • jlanghus
    Feb 19
    Feb 19

    You're welcome:) I bet. Yes, it's great that your are raising awareness for the disease. Have a good one!

  • Yes, Jill. I invited Kevin's mom to be part of World Pulse so she can share her story. She knows all the details about their lupus journey. She might post her story soon. Let's wait for it.

    Thanks again!

  • jlanghus
    Feb 20
    Feb 20

    Hi Karen. What a great idea:) YW. Have a great day!