Identity & Illness

Feb 1, 2019 | 2019 Winter - Bisexuality and Disability

By jeanette gandionco lazam/Waimanalo

Sometimes, even all the love and kindness from family and friends just doesn’t make all things better, especially when you’re suffering from long-term illnesses that bring on extreme pain and other opportunistic sicknesses and disease, making your life more unbearable. Sometimes being alone, sobbing loudly or quietly, helps to release the tension and anger that has built up, and letting loose almost seems like a Waiting to Exhale moment. Just one big inhale and then let it all out. The frustration, the anger, the sadness, the depression, the good times, and the bad times…just to start all over again repeating the mental cycle of someone who has a long-term illness.

The illness (or illnesses) are now your identity. And as your symptoms become worse over the months and possibly years your identity exists because your illness(es) exist and vice versa. Once there is no longer an illness, your identity with that illness dies. It may die due to death, or it may die because the illness dies, but you continue to live and struggle to gain a new identity. I have gone over and over these ideas in my head. I have reviewed how I relate to people and how people relate to me. Try as I might in attempting to change my relationship with friends it is tantamount to waging an uphill battle.

I have congestive heart failure (cardiomyopathy) Stage 4. Stage 4 is the end of the “numerical” ladder; there ain’t no more stages or “rungs” from which I may climb up or slide down. One way or another, this disease will take me out; if not this then most likely cancer (again). Just recently, I was diagnosed with spondylorapathy arthritis, a very different type of arthritis that is excruciatingly painful and to some measure, debilitating. I now walk hunched over with my head facing down so as not to squeeze the nerve endings with the vertebrae in my neck that send lightning bolts of sheer nerve pain down my left arm. For a while, I had to sleep with my head in a certain position so as not to (again) have the vertebrae in my neck crunch down on the nerves in that area. Prior to this I was known for my heart disease, and now that my heart symptoms have stabilized somewhat, I now am beginning to be known as “the woman with spondyloarthropathy arthritis” in addition to cardiomyopathy. Does it bother me that folks address me with my sicknesses? Sometimes “Yes,” and sometimes “No.” I’m not trying to hide the fact that I have heart disease or sponda… whatchamacallit arthritis. In fact, a good majority of the time I wished I never was this sick… and I sometimes hate myself for being this way!

My identity is so wrapped up with heart disease, (previously) cancer, and now, spondy… whatchamacallit arthritis, diseases so debilitating that they play with my mind a good portion of my day. The mood swings, the self-pity, depression, thoughts of running away, but where to? Somewhere close to a hospital just in case something happens to me (good gawd almighty!). Being angry at the medical community for hurting me with their needles, radiation, manipulating my body, and filling me up with drug after drug… Where will it end?

Wanting and sometimes needing to be alone with my thoughts; not wanting to explain anymore of what I have. Missing my mother and father—“Why did they have to die and leave me alone and so terribly sick?” Sometimes I wanna scream!

Other times I wanna laugh, sing, and dance. I wanna feel the earth, touch the sky, smell the green grass, and possibly lie in it and roll down a hill. I wanna feel alive again! I want a new “Living” identity that greets people with love, patience, and kindness, THAT IS WHAT I WISH!

And, in the meantime, I’ll be one with reality. I’ll be one with my own situation. And on some nights, I’ll pretend that I am MALEFICENT, climbing higher and higher until the head winds catch my flight and I am finally WHOLE AGAIN, with one half still acknowledging my sickness, and the other half like a caterpillar struggling to emerge from my cocoon with a new identity that can carry the weight.

I hope my rebirth will not be too long!
All Pau, October 21, 2018

mi tierra mi las mujeres somos territorio de conquista!
(neither earth nor women are territories to be conquered!)

Born and raised in New York City’s Lower East Side, jeanette moved with her family in the mid ‘60’s to SF Bay Area where she continued her political activism for social justice and equality with an emphasis on building and contributing to the struggles against racism, sexism, and all the phobias directed at LGBT communities. She is active in American-Filipino issues, is part of the Anti-Fascist Front in the U.S. and internationally, and resides in Ashland, Oregon, with her two Black cats.

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