Posts tagged Acceptance
Living as a Quadriplegic

On March 19, 1991, Larry Brennan broke his neck.

He was 18 years old and suddenly paralyzed. He’s had to use a wheelchair ever since.

At the time of the accident, Larry was a freshman at the University of Massachusetts Amherst; he was in the Bahamas with friends on spring break. The details of the accident are fuzzy, he says, because he was intoxicated at the time, having been on a “booze cruise” all day. He remembers running down the beach, then nothing else. According to his friends, Larry dove into the water. The impact broke his cervical spine.

Initially, when his friends saw him lying face down in the water, they assumed he was snorkeling, and it was several minutes before they realized he was in trouble. He wasn’t breathing when they pulled him out. One of his friends knew CPR, and working with the others, tried to resuscitate him until the ambulance came. Larry coughed up sea water and started to breathe again, but his heart stopped and restarted numerous times before help arrived.

Larry was raised in Wakefield, Massachusetts. In high school, he was a popular, 6-foot-4-inch athlete. He played football and tennis, became an accomplished skier and had many friends. As a freshman at UMass, he was flourishing, and his spring break trip was a highlight.

The accident damaged his spinal cord at the C 5-6 level, basically his lower neck, leaving him a quadriplegic (meaning he has weakness in all four limbs). He can move his shoulders and his upper arms, but not his fingers, and he’s completely paralyzed from the upper chest down, with total weakness in his core trunk muscles and legs. However, Larry’s injury is considered “incomplete” in that his sensory nerve fibers were spared and his sensation is intact. For this, he feels lucky.

Here, Larry talks about coming to terms with his injury and learning to live a productive, happy life — though one he says he wouldn’t wish upon anyone else. He finished college at UMass Boston six years after his injury. Now, he lives alone with his service dog Emmie, and gets help from a home aide. He works full time as a Senior Development Officer at Massachusetts General Hospital; goes on dates, skis and sails, and still hangs out with his high school buddies. As Larry puts it, “the biggest thing for me is that I live a full and active life — similar to how my life would have been had I not been injured. Now, I can’t walk, but this is not so important to me anymore. I care most about my relationships with friends and family, staying active and having fun.”

In meeting Larry, I realized how little I understood about quadriplegia before our interaction. I never really stopped to consider the day-to-day challenges that someone in this situation faces, and the tremendous strength that it takes to overcome these obstacles. Moreover, meeting Larry has made me think about how our fears of the unknown can hinder true and genuine connection in life. When I first met Larry, I was nervous, checking myself, wondering how to be. Should I try to shake his hand or will this make him uncomfortable? Should I offer him food and drink during our meeting or will that be too hard? And so on. Larry has taught me that it is better to just ask, to be direct, and not to let these mundane, functional issues get in the way. Larry has no hang ups about these things, so why should I? We just do some things differently, and that’s all.

Originally published on WBUR Commonhealth Blog, March 9, 2012

Resources:

http://www.mayoclinic.com/health/spinal-cord-injury/DS00460/DSECTION=symptoms

http://www.nytimes.com/health/guides/disease/spinal-cord-trauma/overview.html

http://www.spinalcord.org/resource-center/

Photo Credit: Mark Hunt

A Transgender Teen Tells His Story of Navigating Gender Dysphoria

Zachary went through puberty twice, first as a girl, then as a boy, after he started taking hormones. “The second time was a lot better,” he said. “I got excited when my voice cracked, and when I started to smell different,” though he adds that excitedly telling friends that you smell really bad is kind of a conversation killer..

Zachary is transgender. He was born female but he has always known, even before he could articulate it, that he is male. His journey has been challenging, and he suffered from depression for many years as a result. But he is now a confident, happy, inspiring young man

Last month, Zachary, 19, graduated from Methuen high school. He’ll start Wheelock College in the fall, where he has received the four-year, $20,000 annual Passion for Action scholarship for his demonstrated commitment to community service, leadership and scholarship. He plans to become a social worker with the goal of working with LBGT (lesbian, gay, bisexual, and transgender) kids.

Medically, a transgender person can choose to pursue hormonal treatment and/or surgery in order to bring the biological sex closer to the gender identity, though no intervention is a necessity. For female to male trans people, like Zachary, the surgical options include removal of the reproductive organs, “top surgery” (mastectomy), or “bottom surgery” (construction of male genitalia). For now, Zachary has chosen to pursue hormones, removal of his uterus and ovaries and top surgery, but doesn’t feel that he needs to have bottom surgery. He stresses that this is a personal decision, and that no two transgender people are the same.

Sexual orientation among transgender people is equally varied. Zachary identifies as bisexual. He has dated females in the past and currently has a boyfriend who is a female to male trans like himself. Their shared experiences have brought them very close.

I have learned a tremendous amount from Zachary. I now better understand that people are born with a biological sex and a gender identity, and that these don’t always match up. Trying to ignore ones gender identity, or to force it to align with ones biological sex when this doesn’t feel right, is painful and psychologically detrimental. To feel whole, gender identity must be embraced, but when there is incongruity between biological sex and gender identity, as is the case for transgender individuals, society doesn’t make this easy.

Most importantly, Zachary has taught me that we all need to educate ourselves and develop tolerance toward transgender individuals. He is a person with tremendous courage and integrity, but he has been forced to deal with a more difficult set of decisions than most of us, and with societal discrimination.

This week, the Joint Committee on the Judiciary in Massachusetts held a hearing to determine the future of the Equal Access Bill.

This bill would add “gender identity” to the Massachusetts civil rights law for public accommodations. As it stands, this law prohibits discrimination on the basis of “age, race, creed, color, national origin, sexual orientation, sex and marital status” in public accommodations, but does not protect transgender individuals. Put simply, this means that Zachary could be denied service or treated unfairly in a restaurant, an airport, a retail store, a public bathroom, on public transportation and so on. According to a national transgender discrimination survey published this year, up to 50% of transgender individuals in Massachusetts have experienced verbal harassment or mistreatment in public accommodations.

Originally published on WBUR Commonhealth Blog July 12, 2013

Resources:

For general information:

http://www.glaad.org/transgender

http://community.pflag.org/staff/transgender

For parents and families:

http://www.imatyfa.org/resources/parents/

Photo credit: Marilyn Humphries, Greater Boston PFLAG

 

Navigating Infertility

In April 2014, Sue Levy shared her story of living with Lymphangioleiomyomatosis (LAM), a rare, progressive and potentially fatal lung disease. Now, she shares her story of navigating infertility, a journey that started years before, but ultimately was informed by, her LAM diagnosis.

Sue, now 37 and married with two young daughters ages 18 months and four years, underwent six unsuccessful cycles of IVF before she and her husband decided to explore alternative ways to have children. They initially pursued domestic adoption but ultimately decided on egg donor and gestational carrier.

A couple is deemed “infertile” when they are unable to conceive after one full year of unprotected sex. In the U.S., approximately 11% of women 15-44 years of age have a difficult time getting pregnant or carrying a pregnancy to term, according to the CDC. While the use of Assisted Reproductive Technology is much more common today than it once was, the term “infertile” is still fraught with negative connotations, especially for women. Dealing with infertility can bring up feelings of shame, failure and loss.

Today, Sue can honestly say that her inability to get pregnant was a blessing, in part because her lung condition is estrogen responsive and can worsen in pregnancy, but mostly because she cannot imagine having any other children than the ones she has now. Her story reminds us that although our plans don’t always unfold as we had hoped, we can find unexpected joy and beauty along the way if we open ourselves up to the possibilities.

Resources:

http://www.health.harvard.edu/topic/infertility-resource-center