The bathroom agenda

I find this whole bathroom discussion absolutely ridiculous for a variety of reasons, most of which stem from my experience with both sexual assault and a transgender male-to-female whom I happen to live with. Unless you truly know what a transitioning transperson does to make themselves the gender they feel that they are in every fiber of their being, the effects of their therapy, etc., then you have no idea what you are talking about.  Everyone should know how to Google at this point. There is no excuse for ignorance in this day and age of Google.

I live with a person who is transitioning from male to female. No, I had no idea when I first saw them again after 25 years that they, in fact, were really a woman underneath the goatee and extra pounds. That didn’t come out until later, after a slew of issues began cropping up and I was completely puzzled as to the reasons for them. Issues that are personal and none of anyone’s business, and those like “Why does he want to know whether I am wearing my boots to work or not?” What the hell was going on? Anxiety attacks? What? And why the f*ck did he shake like that? I didn’t remember the shaking from when we were kids.

The night I was told that sometimes this person liked to wear my clothes while hiding their face in their hands was one that I will never forget. The moment when I realized that this was much more than someone wanting to wear my black dress is also one that I will never forget, and it was excruciating. I realized in that second, that this person never existed; they never were who they said they were. Moments we had from our youth were completely different and I no longer understood them. I couldn’t look at photos of us from that time period for a long time. And then the day came when I saw that the shaking had stopped. The anxiety attacks lessened. The true person began to emerge and I made the decision to learn how to love that person. I could really see them and who they really were. I still can see them, and more of that person comes out every day. It’s pretty amazing and worth every second.

Sometimes when we go out, people call us “ladies”. She beams from the inside out. Me, I begin to feel the anxiety grow in the pit of my stomach. What if she has to use the bathroom here? What if someone overheard the hostess calling us “Ladies” and then she goes into the Mens room because we haven’t crossed that line yet? Will she be safe? She can’t afford to get into a fight with someone. All of these thoughts go through my head as I watch her get up and make her way to the restroom. When she comes back and there are no police entering the premises, I breathe easier.

You see, this is my life now. I choose to have it this way. I choose this because underneath all of the transitioning, I still love the person. We still have a connection, and she is the first person I have been able to work through arguments with. I don’t know why. It would have made my life much easier if it had been my ex whom I could have had this with. But it wasn’t. He is a very good person and the best father I could have asked for my girls. At the same time, I guess I was more of a lesbian than I thought. Who knew? I certainly didn’t. Well, out loud anyway. I always believed that if anything happened with my marriage that I would just go out with women. I had no idea that this would actually happen.

So where does the sexual assault experience come in? I have had the unique pleasure of being in a situation where I was pressured to have sexual relations when I didn’t want to more than once. When you are a female drunk such as myself, it tends to happen more often than not. I would like to focus on the first one because it was  the most devastating, and because these were boys (yes, there was more than one at this lovely event) whom I had known and grown up with. I thought highly of these boys and one I was particularly fond of. When they came into Friendly’s where I worked, I was thrilled to see them. Except this type of attention wasn’t what I was looking for that night. Beer was part of the equation and what little sense of judgement I had went out the window. I was taken advantage of and they didn’t stop. Even as I had tears fall down my cheek, and said in a heartbroken whisper to no one”But I really cared about you, I loved you” I couldn’t understand why this was happening. It wasn’t enough to snap him out of it. This boy who was from a good Plymouth family, went to a private school, was an excellent student and good samaritan.  And I was….me. A drunk girl who should have just gone home. At the time I felt unworthy to get away. I had finally gotten the attention from him I had been wanting for so long. Attention that made tears fall down my face as I pretended I wasn’t really there.

I remember the car ride home was in complete silence. I was shoved out of the car at the bottom of my driveway. No goodbyes necessary. My bra was missing, my clothes were wet, and I had no idea what time it was. My mother was waiting for me at the door, not having a clue what happened. She didn’t speak to me for two weeks. This was right before I went to college. Again, as an adult I take full responsibility for putting myself in a precarious situation. However, when I asked for them to stop- when I had tears running down my face and looking like I wanted nothing more than to go home, they should have stopped.

One of them has at least one daughter that I know of. Sometimes I wonder what he would do to someone who did to her what he did to me. I’m sure he thinks of it and maybe out of guilt is friends with me. Who knows. Here is what I do know – if someone is going to assault someone, a law isn’t going to stop them. What it will stop,  is people trying to be themselves being able to use the bathroom in peace.  Someone commented that some MtF still look ‘male’, so that would certainly be a red flag to people. I guess is their own fault since they can’t afford surgeries or hormone therapy, or maybe haven’t been able to take that step because they will lose their job if they came out. It’s their fault that others are uncomfortable, when they themselves have been uncomfortable their ENTIRE FREAKING LIVES. Live and let live. Pretty simple.

I am sure you must be wondering where the hope is in all of this. The hope in this for me is that I hope people realize that these people aren’t men in dresses drooling over their kids. I hope that people see that a person who is transitioning isn’t interested in anything other than using the facilities. I hope people understand that there are predators out there, and some of them hide behind masks of a private school, good family and educational background.  I hope that people understand that I am who I am because of these experiences, that I rose from those fiery pits of alcoholic despair and rose above to begin caring about myself. My hope is that my girls will  love themselves more than I ever did at their ages- and in doing so, will make decisions based out of love, not the fear I see around me today.

 

Speaking of fear- I was so worried about this echo that Izzie had today, that I actually kept this a little to myself. Our cardio texted me that everything looks great. Her energy levels have been all over the place but now that we know that her heart is showing no signs of concern, I feel like we can relax a little.  Always can find hope in that!

When truth slaps you in the face and pops your balloon.

Last night a fellow heart mom posted a link to a study made by the Single Ventricle Survivorship program at Children’s Hospital of Philadelphia. The title included the word ‘relentless’ and was about the Fontan circulation which is what Izzie has. Since March 5, 2012 I have educated myself on her heart defect and read research in hopes that new breakthroughs are on the horizon. When I read these article, I read them with great hope. If hope were balloons, all of them were popped last night.

The article begins with this statement: The Fontan circulation impacts organ systems in an indolent and relentless manner, with progressive decline in functionality likely.

Ok, I knew that her circulation was less than ideal. This shouldn’t be a surprise to anyone. What was a surprise was reading that multiple organs are affected by this, not just her liver. Every Fontan patient will develop fibrosis in their livers- there is no getting around that. It is a natural byproduct of the pressures that have developed from the circulation. Her blood flow to the lungs is passive and dependent on various pressures to get where it needs to go. This high pressure affects the liver, lymphatic system, and inevitably, her heart function.

Speaking of heart function…

Another lovely side effect is a decline in heart function. Well, we knew that. We knew that her right ventricle is not as strong as the left and will eventually give out. What I didn’t know is that it may also have lost the ability to gain endurance. In other words, if she runs, she isn’t building up muscle strength in her heart. We learned from her last hospitalization that something has affected her sinus nodes so her heart rate has dropped in her sleep. These same sinus nodes fire off electricity necessary to increase VO max in the heart that allows for stamina to build.

I was heartbroken to read these things. I want more than anything for her to be able to do the things she wants to do. This doesn’t mean we are saying no to soccer or anything else besides football. This means that she will always lag behind and struggle amongst her peers. There may never be a point where she can be at their level even for a minute. That is what upsets me. I see her face as she watches her sister run ahead of her. I want to pick her up and run with her, but she says no very emphatically when I ask and keeps trying. Sometimes it ends with her coughing to the point of vomiting. Would you like to worry about whether your kid is going to puke in public or not just because she wants to run like her sister? I didn’t think so.

The last message I received from the article is that Izzie will need a transplant. There is no maybe. The only question for her is when. Here is where it gets painful.  I try so hard to be open to other families fighting diseases like cancer and the publicity they get with positive attitude. Honestly, it is extremely hard when you feel like no one is understanding that your child’s condition, like cancer, is fatal. She doesn’t have the option to have chemo and then be declared CHD-free. She will always have to worry about herself in a way that most kids don’t. Every illness that affects children is tragic. Izzie’s is tragic too, and just because she is running around right now does not mean that she will be fine ever after. Looks are deceiving. We have learned this painful lesson with her over and over again.

I am not saying that cancer isn’t a horrible disease. DIPG and all of the quick moving tumors deserve to get attention. What I am saying is that heart defects and the side effects of them are also just as horrible. Here are a few in case you didn’t know: poor eating, failure to thrive, neurological issues, constant monitoring, multiple surgeries, having to be cautious when others are sick, needing oxygen, heart failure, issues with lymphatic system, arrhythmia, living life out of a hospital room. This is our life and the life of many friends’ of mine, and when I read an article like this it reminds me of how much more needs to happen for our daughter to have the quality of life we hope for her.

I asked Chris to print this out and I will enter our clinic visit armed with questions about how can we be proactive with these side effects. What is BCH doing to address these issues? Why isn’t there a single ventricle survivorship program like what is at CHOP at BCH? Look out, cardiology….I’m coming and I want answers.

Marathon Monday

On a day when many people I know are standing at the starting line waiting for the race to start, I am sitting here in my pajamas sipping the last cup of coffee out of the pot. People’s excitement is threaded throughout my FB feed and it is hard not to get excited for them as they make their way to the start of one of the most memorable run of their lives. I am happy for them and thrilled that they get to have such a coveted spot that so many people train tirelessly for and not get. The hope I want to talk about today is my fading hope that someday I will be one of those people.

When Izzie was accepted as a patient partner for Miles for Miracles, I was over the moon excited. This chance would bring me closer to that dream I had of running someday. This would also allow us to participate in the greatest race of the year. What I didn’t count on was other people around me not sharing the same excitement.

When you submit to be part of a great fundraiser such as this, everyone needs to be on the same page. Expectations need to be set and a strategic plan needs to come together. It also helps if the people you are partnered with make a connection to your child. The runners we had didn’t meet Izzie until we had our fundraiser for them before the race. I would be sending emails and forcing the connection. It felt very awkward. It didn’t feel as though they really understood what our life was like  as a medical family and how fortunate we felt to have Boston Children’s in our lives. I was hoping that we could be at the Miles for Miracles events together. That didn’t happen. On the day when we were to meet the runners at an event sponsored by the hospital, neither one was able to make it. I felt like my dream of having this inspirational experience was fading fast. This wasn’t what I had thought it would be. It didn’t get much better after that first event.

We planned a fundraiser and thanks to my in-laws, was a huge success. I guess it was a good thing that they took over where they did and made everything happen. There were many parts of the planning that I hadn’t though of but they did. As the days came closer to the date,  I began feeling like this was not a good idea. The parts that I did do – the brochure, posters, and news article, weren’t good enough. I felt very disconnected and not an important part of the process. To make matters worse, the runners who were running for Izzie didn’t understand that we were raising money for them. I can’t imagine how I would have felt if they didn’t show up.

After the fundraiser, things didn’t improve much. The benefit recognizing us for our efforts was very stressful. We didn’t meet or socialize with other families like I had wanted to. This wasn’t what I had planned for in my mind and it was very disappointing. My family knew that I was upset and chalked it up to my typical moodiness.

Race day was exciting and we all were at the BCH area in Wellesley to cheer on our runners. For a little while I felt like we had done the right thing and that we were part of something great. We were part of something great. We helped raise money for the best hospital in the world. We were just like all the other families that were there but we hardly chatted with anyone. It wasn’t the camaraderie that I had hoped for. None of the Miles for Miracles was what I had thought it would be for us.

I am not blaming anyone here. Chris did his best to try to make it be successful and so didn’t other people. My friend had his band play for free and that was a huge success. Other friends from my meetings and such came and supported us. It wasn’t a total loss. What I am starting to see now is that I had forced something to happen instead of letting it happen. I had taken a dream of mine and forced others to share this dream.

If and when I do apply to run for Miles for Miracles again, I will make sure that everyone knows my intentions and is willing to support me. I want to run for Izzie, and for many of the cardiac children who are her comrades in arms on 8 East. She still has her moments and our hopes for new treatments for her condition grow every day. Recently, she was hospitalized overnight and it was a stark reminder that she is not cured. We need more options for her and for others like her.

Tuesday we have a cardio appointment and we are taking Addie with us so she can see first hand that these appointments aren’t always fun. Sometimes it is really hard to be a patient and Addie needs to see that. She needs to understand that her sister didn’t ask to have a heart defect, and wants to be just like her. I think this non-invasive appointment is a great way for her to see this.

I wish everyone on the Miles for Miracles team great luck today and thank you for running for us!