Proud with a Heavy Heart

Have you ever had an experience where you were elated and heartbroken at the same time? Proud, with a heavy heart? I did recently, at a workshop called Chronic Illness and Gender Confirmation Surgery. I’m going to guess that you have not attended a session about this topic.  Neither had I until last weekend. This was the presentation that my daughter, Autumn, led at the Philadelphia Trans Health Conference.  It’s not a session I ever imagined I’d attend.

I am so proud of my daughter for having the courage to do this. She and a couple of friends create an entire workshop and submit their idea to be presenters at this national conference months in advance. They put themselves out there to share some of their most personal experiences as part of a panel, and live stream the workshop for others who cannot attend in person. She travels across the country to get there and uses more energy over five days than she has in weeks. And she is spectacular. Poised, articulate, informative, and likeable. Autumn is only 19 years old and she has the courage to do something that many adults would be too intimated to do.

As I travel with a friend to Philadelphia, my friend wonders how I will feel seeing my daughter in a wheelchair. Although I’ve seen her in a wheelchair during physically rigorous trips, I’m not used to it.  As proud as I am of my daughter, her courage and advocacy, the fact still remains that Autumn is equipped to lead this session because she has a chronic illness. And that upsets and worries me tremendously. She also is transgender. As grateful as I am that my daughter’s gender identity is not something she needs to hide,  I still wish for her sometimes that she could live the seemingly safer and easier life of a cisgender person.  Do I prefer that she was leading a workshop celebrating her health and wellness instead of having a chronic illness as a transgender person? Absolutely.

As I greet Autumn, she is surrounded by a group of peers. She is sincerely basking in the joy of knowing that she has so many true friends here. It’s often hard to remember how many people we have in our support systems, when we are back in our own homes. This national gathering serves many purposes, and the friendships and connections to others who “get it” is probably the most important. For me, as well.

As we walk around the convention, looking at the different vendors and talking about how everything is going so far, Autumn’s energy is excited and confident.   I had questioned to myself if she would have the physical stamina to make the journey from Oklahoma to Philadelphia, attend this three-day convention, and then lead a forum. But there is no question that she is prepared, capable, and determined to present.

Upon entering the conference room, it’s clear that there is some work to be done. The dais for the panel of presenters is up on a platform, however each presenter is in a wheelchair. It couldn’t be a better introduction into the ignorance that people with physical challenges face all the time from those of us who are “able-bodied.” So a plan B is implemented quickly, ignoring the dais altogether. We also remove the first few rows of chairs so that people with wheelchairs can sit up front. Room is created, as well, for those who benefit from the sign language interpreter.

My daughter and her friends share their experiences as transgender patients, who also have illnesses. They advise on how to communicate with medical personnel, who often are confused by either the transgender identity, the chronic illness, or both. Through anecdotes we learn about how important it is to be well-informed and an advocate for oneself.

Before the program,  I wonder if they will get an audience for such a targeted topic. My daughter does not seem concerned, even though there is a popular annual dinner being offered during that same time. At first there is a smattering of people, including another set of proud parents, like myself. But as the hour progresses I become amazed by how many other people quietly fill the room. Much older people and young teenagers. People whose hygiene is questionable and who look like they haven’t had a good meal in a while, and others who look happy and healthy. Glancing at so many of these audience members, I cannot identify if they are transgender or have illnesses. I wonder what is compelling them to attend the presentation.

As the Q and A starts though, it becomes evident that each of these attendees is indeed transgender and chronically ill, and this forum is providing them with an opportunity to ask their most personal questions.  These people are suffering and it is distressing to hear their stories.   Because Autumn and her fellow presenters are so candid and personal themselves, they create the space for any type of questions. And I know that this workshop is an absolute gift to those who have no one to ask and nowhere to share. People share their struggles, expose their vulnerabilities, and ask for help. I am very impressed with the sensitivity of everyone in the room. Autumn and her fellow panelists respectfully respond, guide, advise, and answer every query, no matter how out of their league it is.

Something else that strikes me is how paramount the need to identify as one’s true gender is,  no matter how sick someone is. People are desperate to make the physical changes, even if it means running out of money, compromising their health further, or defying doctors’ orders in order to find the one who will agree.  That is very humbling to me, a person who identifies with the gender I was assigned at birth.

However, above everything else, here’s what really sticks with me. My daughter has certainly had a lot of challenges over the past five years.  But instead of feeling defeated by those hardships, she takes a completely different tack. She educates herself as best she can, and then she makes it her purpose in life to support others with similar difficulties.

When she first came out to me as transgender, my biggest fear was that she would not be able to realize all of her hopes, dreams and goals. She has thankfully proven me wrong! She has love in her life, she educates herself, she is active in her communities, she has many friends, and she has found many life purposes. When she had to leave college to deal with her illness, I once again was nervous that she wouldn’t be able to reach her aspirations. She set me straight immediately. First she let me know that now she would be changing majors to biomedical engineering so that she can create devices to help individuals with disabilities become more independently able. She let me know that, “I’ll still do everything I always dreamt of doing. I just have to adapt and find another way to get there.” And that’s what she’s doing.

You see, it’s not being transgender or having Ehlers Danlos and POTS (Postural Orthostatic Tachycardia Syndrome) that makes my daughter unique. It’s the fact that she does not have that inner voice that stops most of us from trying new things. She does not have thoughts that tell her why she’ll fail at something. If an idea occurs to her that the world needs a creation, she will start creating it. If there is no Gay Straight Alliance at school, she will start it. If there are no local support people for other trans youth as they transition, she will be that person. If there are not enough moderators for a popular transgender teen forum on Tumbler, she’ll moderate. If there is no support group for Ehlers Danlos in Oklahoma City, her new hometown, then she will create one. Which she did. And today she held a crafts afternoon for that support group.

Because, my daughter does not become limited by her challenges – she becomes empowered to turn those challenges into strengths. She is a visionary and that is how she views her world. And I am grateful and learn from her. As my son said when he previewed this post, “Mom, looking at your title, I think it’s 90% pride and only 10% heavy heart.” Yes. The heaviness does weigh a lot, but the pride and anticipation as I watch how Autumn changes our lives next, weighs much more!

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3 thoughts on “Proud with a Heavy Heart

  1. So interesting that our heavy hearts would focus on the struggle, the illness, the fear. Perhaps it is because we do not lack that voice. It is loud and clear in my head. By the end of you post my ‘heavy heart’ was wishing I were more like Autumn.

    Like

  2. I watched this streaming on my computer. Autumn was wonderful and it was all informative as well as important dealing with these two issues,
    Your blog here dealing with the conference was also informative Diana.

    Like

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