When my sister is suffering

This is the second in a series of guest posts from activist, educator, and writer Dena Simmons.

In eighth grade, my twin sister, Dana, became ill with cyclic vomiting syndrome, a rare stomach disorder characterized by severe nausea and vomiting that lasts for hours, even days. At the time, I was too young to understand what it means to have a chronically ill family member.  I grieved and continue to grieve each time she is ill, each time she is mistreated at the hospital, each time she says she does not have the will to live anymore.  Now, fifteen years later, Dana’s rare illness has become as much a part of my life as it has become a part of hers, but the pain and suffering have not stopped.  Along the way, however, my family of all women and I have developed coping strategies to keep us trucking even when times are difficult.

The truth is that I feel utterly powerless when my sister is suffering, and I do not often share with others that my twin sister is sick because for a long time, it made me feel vulnerable. Growing up as a Black woman with Caribbean ancestry in the United States, I learned that I must be strong and independent; so, I remained silent about my sister’s illness.  I kept my pain bottled inside like a prisoner.  The only refuge I had was in writing my pain onto whatever page I could find.  In writing, I found healing, and as I matured and became more independent and grounded, I found healing in helping others.

In that quest to help others, I came across Casa Atabex Ache where I volunteered during my final year of teaching and still get involved when I can.  When I first walked through the doors of Casa Atabex Ache, I was overcome by the overwhelming openness, support, and love I felt, a stark contrast to the stress and grief littered throughout the impoverished streets of the South Bronx, where Casa Atabex Ache is located. Casa Atabex Ache is a refuge, a safe space, run by women of color for women of color.  They believe that the many systems and institutions of oppression and poverty breed violence, and cause diseases in communities of color that dramatically impact the health and the ability of inhabitants to have control and power over their lives.  Fittingly, Casa Atabex Ache empowers young and adult women of color by teaching them how to identify the sources of their oppression so that they understand how it impacts their minds, bodies, and spirits, as well as equips women with healing and community organizing skills so that they can be their own advocates for justice.

When I recently learned that Casa Atabex Ache was running out of funding and may lose their capacity to run programs, I immediately thought of the many women of color in need of healing and now who might have nowhere to go where they will feel comfortable to be who they are or to express their struggles, their desires, and their pain in a safe space like Casa Atabex Ache.  Again, I feel powerless like I have felt so many times before when I watched my twin sister suffer.  Again, I seek refuge and power in writing.

Although I initially was attracted to Casa Atabex Ache because I wanted to help, Casa has mutually helped me.  It was at Casa Atabex Ache that I, and many women before and after me, learned that sharing my pain and vulnerability is courageous, empowering, and healing.  It was at Casa Atabex Ache that I realized that our built environments and the many social injustices that poor people and people of color face affect our health.  It was at Casa Atabex Ache that I found a community of supportive women of color who were willing to stop what they are doing to help a sister in crisis. Where will the women go if Casa Atabex Ache’s doors close for good?  Why aren’t there more communities and spaces of love and healing? What do you do when you are in need of healing and support?  Do you speak up or keep it bottled in?  Where do you go?

Check out a recent Bronx 12 news story on Casa Atabex Ache:


Join the Conversation

  • http://feministing.com/members/ljepotica/ Ana Casian Lakos

    I’m so sorry about your sister. That kind of suffering has to be beyond endurance, for both of you.– Thanks for sharing with us.

    • http://feministing.com/members/denasimmons/ Dena Simmons

      Thank you so much, Ana.

  • http://feministing.com/members/tigerlily87/ Laurie Callaway

    I am so grateful for this post. I too have CVS and I have had it for my entire life. You are only the second person I have ever heard mention it or know someone with it. Whenever I think of CVS I remember pain, fear and despair – I was not diagnosed until I was 20 and I never knew that I could seek medical treatment for it until I was 17. However I never though about how my family must feel and how my partner is affected by it. It must be so hard for them to see me suffer from the rapid onset of a disease that they cannot prevent. I am so thankful for your post and will do everything to support Casa Atabex Ache.

    • http://feministing.com/members/denasimmons/ Dena Simmons

      There are CVS support groups. You should check them out. I went to one with my sister, and I think they are great resources for people–both people with CVS and loved one.

  • http://feministing.com/members/meg2good4u/ Megan

    I also grew up suffering from CVS….I wasn’t diagnosed until I was 15, over 7 years after the first misdiagnosis. The only effect I saw that I had on my family was ruining every Christmas and Halloween, seems I was always admitted during the holidays. Older now, I see it affected far more than holiday scheduling. It is a wonderful thing to turn suffering into something positive and empowering. Kudos to you.

    • http://feministing.com/members/denasimmons/ Dena Simmons

      Thanks, Megan. Dana felt/feels similar guilt in “ruining” holidays, and I imagine the thought of holidays might make you anxious in fear of “ruining” yet another family celebration. You should not despair. You have no control over your illness and thus should not take on the guilt. Jay, who commented below, suggested mindfulness meditation, and I second that. I think there is much power in being mindful and paying attention to our breath, our life force. Learning to let go of the guilt and anxiety attached to your belief in “ruining” holidays will help you tremendously. I send you much healing vibes and support. You are a trooper. Also, look into the CVS support groups. If you are in the NYC area, the CVS support group is having an event that you would probably enjoy.

  • http://feministing.com/members/tetercreek/ Jay

    Reading through the page describing CVS it seems that getting into a stress/anxiety/fear reaction is part of the triggering situation for the vomiting. The anxiety/fear reaction sets off a lot of reactions in the digestive system and causes hormones like adrenaline to be pumped into the blood. Some people may get a stomach ache, some diarrhea, and maybe some have this severe vomiting.

    Obviously people who are stressed financially, live in danger and insecurity, who have had trauma and abuse in their lives are going to be more likely to have a syndrome like this. The important thing is to learn how to deal with the anxiety reaction and learn to calm it down before it starts its damage.

    It looks like a place such as the Casa Atabex Ache could help in this situation by providing the community support and empowerment as an antidote to the stress reaction along with the lorazepam. Mindfulness meditation is something else that may help.


    I hope everyone here gets better. I don’t like to give a lot of advice, but I think some of it might help.