Friday 2 January 2015

More Lessons Learnt Via My Partner's Transition


A while ago I reflected on what I had learnt as the partner of a f to m trans person. Over the last few weeks and indeed the last few hours I have learnt a bit more about what can be involved. In this post I am going to reflect on what I have learnt / experienced recently, a lot of this relates to accompanying somebody through surgery but not all.

Lesson 1: Don't be an ostrich preparing for surgery but be aware what you are looking at

I knew that autumn 2014 would involve Karl having his upper surgery (chest reconstruction) which involved a double mastectomy and nipple graft  but I didn't know when. Initially I was completely unsure what to expect and panicked. My initial reaction was to do a bit of an ostrich impression, but this wasn't helpful.

What I did do as soon as I knew the timescale they were giving for surgery which was helpful was let my work know that he was having an operation and I would need to amend my desk time slightly to help care for him, getting this agreed in writing. I didn't go into details but it meant that I had that confidence it had been agreed in advance.

I was terrified of what the scars would look like and as somebody who has never cared for an adult previously I was also terrified of what would be involved. The most helpful moment I had was when I took up a friends offer of talking it through, based on her experience of looking after her mother post a different type of surgery, but involving a similar part of the body. It was this conversation which gave me the confidence I could do this....perhaps.
Regarding the scars Karl did try to get me to read some of Fred's material in the Guardian, referred to in his trans guide, but I was reluctant to look at any photos.

One thing we realised pretty soon after surgery was it wasn't as bad as we expected because all the information on similar surgery had come from people who had had mastectomies as a result of cancer and not transition. There is a difference in surgery and what is removed, as well as the general health of the patient prior to surgery. Karl was able to do far more than we initially expected.

Lesson 2: Be ready to invest in a few bits to make life easier for both of you

As a result of chatting my friend I got an idea of a few things it would be really useful to buy for when Karl came out. These ended up being key items. The first was one of those V shaped support pillows. He has had to lie on his back and I have needed to make sure I have not bumped into him in bed. This has been a key bit of kit for making that easier.

The second was a lightweight cup with a straw together with a couple of light weight jugs and a few small beakers. Karl could do very light lifting of some objects from the start, but not much. Getting one of those camping style beakers which kids use in the car was just what was needed. The small beakers meant we could have a really small lightweight plastic cup ready for Karl to take his tablets with. The jugs from the £1 shop were also really useful because they meant I could leave water for Karl, because he couldn't initially stretch over and fill something up at the sink. It meant he had some independence, pouring his own but still not go beyond his limit. I filled them to the right level according to how he was able to deal with things.

A cheap plastic tub was also useful. This meant I could leave the relevant bits of his packed lunch in it with a lid over the top and so he could dip in and out of the tub as he needed / wanted. I put rolls in it, ready buttered initially but he was able to put his own fillings in if I left these at a low height in the fridge. This meant he could follow the instructions to do as much as possible whilst not over stretching himself.

Lesson 3: Be ready to be there for confidence rather than help

Showering was something we had been worried Karl would not be able to do, but in the end was pretty much. However, initially he found it really useful for me to be there just in case something happened. This was an important part of his routine, and indeed was the part of the routine where we initially identified a problem with his dressing and later an infection which needed attention. I did end up helping with a couple of things like putting shampoo on his hands and helping dry his back but it was more the knowledge somebody was there just in case.

From my point of view being there to help with this was useful because it was where I started to get a view of the scarring - something I had initially been wary of having to face. Having to deal with it as part of a caring routine made it all easier somehow.

Lesson 4: Don't Panic......But do be concerned and be ready to put the person before work

My biggest fear was that something would happen which would mean I couldn't juggle work and caring. I knew some compromise might be needed but I was worried about how it would all work. I almost had a fit when Karl first indicated it might not all be as simple as I hoped.

In the end I only ended up missing one class as a result of things going wrong and that was the morning his dressing started letting water in. That morning I could tell how terrified Karl was about what was happening, he was very clear on the dangers involved in various scenarios. I knew that at that moment my husband had to come before my class.

Yet, we were careful to ensure my routine was not altered too much as that would have been additional stress for both of us. Whilst Karl was the priority, I mattered too and so we tried to set things up so Karl didn't need too much support. Again this helped him do what he was required to of being as active and independent as possible in order to help healing.

Lesson 5: Let the transitioning person make their own decisions about what they can and can't do

Karl was ready to do far more than I expected him to do before I thought he would be ready. This was a bit of a source of friction because I wanted to bar him from leaving the house when he was quite ready and able to go to the cinema one afternoon.

Again I think part of my concern went back to what I had read on line but you have to accept your partner is an adult and knows what they are doing.

Lesson 6: This is not a cheap experience

We had been under the slight misconception we might save money due to the fact that he wasn't going anywhere. This was a mistake, it ended up being far more expensive than we had allowed for one way or another.

Besides the odds and ends mentioned earlier (which were all relatively cheap) he had to get a second surgical binder. You are given one by the hospital but are required to order a second one of this item you have to wear for a number of weeks post-surgery. It costs about £50, this was a cost we weren't expecting.

There are also costs involved in getting yourself and partner about, especially if you don't drive. Firstly there was my going up and down to the hospital, I needed for my sanity to visit every day and it helped Karl seeing me especially as I was his only visitor.

Then there was getting Karl about. This required taxi money, especially in the early days - this was what allowed him to go to the cinema and so on. We were very grateful that people generously offered us help paying for the taxi back from London, it made a real difference as he could not come back via public transport and nobody was able to collect him from hospital.

There was also money involved for me getting extra buses so the length of my journey was reduced slightly, meaning I could spend longer at home.

Lesson 7: Be ready for the reaction of others

This is going to sound a bit weird, but I wasn't quite prepared for the wave of love and support we encountered. Karl's surgery was something I initially felt a bit embarrassed about. After all it was an important operation but if I answered directly and honestly questions regarding it I was revealing he was going through transition and as a couple we are a little bit different. Now don't get me wrong I am not embarrassed by that but I do sometimes feel a bit nervous about it and about how other people will react.

Yet, all I got from people who were aware what was going on was genuine concern and love. It felt a bit like there was this whole big cheer leading team behind us willing us forward in some kind of marathon event. I also felt moved the concern I got from people who I know haven't always felt comfortable about what is happening.

Lesson 8: Value those around you, journeying with you whilst you can

I add this in because today Karl's mum got rushed into hospital and is critically ill. Last time I saw her was when Karl's parents came down and visited us the week after Karl's operation. She was sitting there comfortably asking him all sorts of questions about the operation and getting the pronouns right, even when he went off to the loo.

Sitting in GBK with her it was obvious she has been on one heck of a journey with Karl's transition and getting used to using the right language all the time but had kept going with it and the whole family seems to have gotten there.

This week I have thought about her quite a bit because in the wake of Leelah Alcorn's terrible suicide it is clear that how parents react makes a real difference to trans people. I have thought about how hard it can be for parents as well as for the trans person and about the number of trans people I know who no longer have contact with their families and how hard that must be. I have been very thankful that Karl's parents have been so supportive of him and of us as a couple.

As Karl has rushed up north to be with his family today I have a set of fears it would not be appropriate to voice here....but they are there. What I can say is that beyond all the usual concerns one has for the family in this situation I have a set of thoughts going round in my head which are specific to our situation.

I have fears that relate to Karl and his being back in an environment where everybody knew him in the past before transition and fears which relate to scenario's which may or may not come to pass in the future. The last few hours have highlighted to me how there are situations which come up completely unexpectedly which raise issues which you can't really discuss because they are inappropriate to the situation but they are real fears which relate to having to face the reality of what a trans history means and what others reactions to it may or may not be.
As I say I can't voice these at the moment and my main concern is and has to be that this wonderful woman who has been such a great mum in this situation is ok and out of danger soon. I hope yesterday is not the last time I will speak to her on the phone, hearing her telling me to be careful I'm not working too hard, showing her concern and love.

I know I have waffled a bit but I hope the above has been helpful in giving a further insight into what transition and being part of a couple where one is trans means in practice.

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