Keeping Silent, Creating Taboo & Family Shame
It’s been several months since I spoke to my father on the phone. I did go through 15 months of life-threatening disease, a cross-country medical move, 2 lung surgeries during a lung-eating pandemic, and to top it off — infertility and the grief that comes with that. Some would think that a father’s love would be of use during this time, that occasional friendly phone call or cheerful note. However dads out there do these things with their daughters. I don’t know.
When you are suffering to the depths of physical, mental and emotional severity as I have been, you need others to carry a light some days. The suffering doesn’t end when you leave the hospital.
Three years ago I lost a favorite cousin to addiction and depression. I know what it’s like to think: I didn’t do enough to carry that light for her. Man, I really fucked up. I was ok and she was suffering, and what did I do to be the light?
My sister recently entered into rehab as she has been suffering for many years with addiction and depression. It really spiraled to a low when she was living out of a motel and facing addiction alone. At that time, I talked to my dad and told him, I lost my cousin — and I’m not going to lose my sister. It was a meaningful moment. We both cried. I know there is a sensitive guy in there somewhere.
But, somehow, we are caged in these roles where we do not reach out, there is no connection. Throughout my own intense suffering, I was concerned for my sister and organized a Zoom with my brother and parents to discuss what we could do for her. What could I do differently here that I did not do for my cousin?
The Zoom created resentment. I was organizing for my sister the kind of support I never got. With 19 days in the hospital, I never had the experience with family Zooming-in, no FaceTime. In a time when I was not allowed any visitors, the only faces I saw were nurses, doctors, hospital staff.
I know what it’s like to be in the hospital and not have anyone hold your hand. But before the pandemic, my husband was at my side and he was there. I am fortunate for his companionship. My family asked what the hospital room number was so they could send flowers. No flowers ever arrived. With all my time in the hospital and recovery from major lung surgeries, I do not know what it’s like to have your mom or dad or siblings be there.
I am still paying my medical debt. My parents did not contribute to the GoFundMe that made my life-saving relocation and surgery possible. The weight was carried mostly by friends, community and many strangers. Believe me when I say the list of donors are my list of angels, the level of support gave me the courage to move to Atlanta and save my own life.
Now that I am healed from surgery, I look back and see who was able to champion the effort and who decided not to be on the Donor-List. Those who gave even $1 gave me more than financial support. This is not about money. This is about rallying for someone’s life. People sent checks directly, and of course I appreciate their support as well. My parents’ gift was to pay for the hotel rooms as we traveled from Arizona to Georgia. Just as they helped my sister by footing the bill on her motel room.
Am I an embarrassment to need this help? Is my disease shameful to the family, is my failure to pay for a $115,000+ surgery, or to live a ‘normal’ life an unspoken disgrace? Am I an embarrassment to have special needs?
Many women in my family have Endometriosis. Yet, I am alone in the massive destruction it has wreaked on my life. They went on to have children and live their dreams, without major medical crisis or the medical debt caused by it. They escaped this fate.
I draw a connection between the lives of my cousin, my sister and myself. Each of us experienced deep pain and we developed ways to cope with it, as many people do. The key to recovery is to find others who understand your pain, who validate it. And likewise, for the people who contribute to the fallacy that you’re strong enough to deal with this alone in silence, you may excuse yourself from their company.
