When Catastrophic Illness Changes The Course Of Our Lives

By, Joy Rose

I was diagnosed with SLE (Lupus) ten days after the birth of my fourth and last child.  If you were to tell the story in one sentence, you could say, ‘She was a really nice person, with a really great life and then she got sick”.

SLE did not run in my family, however vague autoimmune indicators did.  My Aunt has subsequently had a liver transplant, and one of my brothers tested positive for the Lupus gene (He does not have active SLE).

That being said, I’m not partial to advocating for the obliteration of one disease over another. Whether its cancer, Parkinson’s or M.S., to the degree one is affected, life can be irrevocably and forever changed and the consequences can be devastating. All disease is difficult.

kidneyWhen the first undiagnosed Lupus symptoms struck, I was the new mother to three children, all under the age of five, living in New York City. A move thirteen miles north of Manhattan, one baby delivery and a lot of doctors later, I was hospitalized for the first time in October, 1994 for a full month. My daughter was a tiny, newborn baby and her brother’s ages two, four and five, didn’t understand what was wrong with Mommy and why she wasn’t coming home for a while.

My husband (at the time) called our pediatrician in tears that first night, wailing that he didn’t even know how to give a baby a bottle – all the kids had been breastfed, and we didn’t own any baby bottles. I lay awake in the hospital bed, near death, plugged into chemotherapy and prednisone IVs, unable to move, or even roll over by myself.

I’d considered myself a ‘work at home’ mother. Caregiving was a full-time job for me, and I loved it. But, we don’t always get to hold on to the things we love.

I am writing this because the older I get, the more friends I watch struggle with aging parents, or illness close to home I realize how terrible things happen to really good people, how life whizzes by at a breakneck speed and how unlikely heroes and SHE-roes can rise up when we least expect it and influence lives in ways we never could have anticipated.

In short, the last 4,380 days of my life have been an unequivocal gift. Everyone in my life, stranger, family, friend or work associate, has been impacted by the courageous gift of my good friend and high school buddy Pam Van Hoesen, who so generously donated her kidney to me on November 30th, 2000 after a seven year battle with SLE and a stint on dialysis at the age of forty three.

Everything I’ve done or said, all the work and energy invested to bring the Museum Of Motherhood to the forefront of the woman-sphere and certainly the many precious moments I’ve shared with family are because of Pam. I discovered my life’s work, and devotion to women’s issues as a direct result of my experiences with illness. In fact, I sometimes wonder, if Pam’s kidney has a special kind of feminist zest that pushed me on to pursue women’s social justice as a passion? I do know this though — I’ve only been able to pursue this line of work because of the miracle of kidney transplantation.

I think about others in need every day and I cannot stress enough, how every day is a gift! Daily struggles aside, financial issues or stresses brought on from work be damned. This is the season of giving; the season of being grateful and the season when we count our blessings, whatever they are. Mine are many. But, none of them would be possible without the work of doctors like Joseph Murray and friends like Pam. I encourage you to take stock during this season and keep your focus on the important stuff, which ironically, isn’t stuff at all.

*More about SLE: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001471/

*More about kidney transplantation: http://en.wikipedia.org/wiki/Kidney_transplantation

*More about M.O.M.: http://www.mommuseum.org


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