For quite some time I’ve thought about how to keep the spirit going, living with HAE, I mean. I have HAE II and so has my sister, my father and my 17 year old son Tobias. All of a sudden it got pressing for me to tell my HAE story, since I got seriously ill in the summer of 2014. It turned out that I had breast cancer, and I had to have my right breast removed along with all my lymph nodes in my right arm. I went through chemotherapy and radiation, and was done with my treatment in February 2015. Little by little I started to work again and had a new job in May – but by the end of June the doctors discovered that my cancer had spread to the brain. As the tumor is inoperable and terminal I have only months left to live.
I can’t stop wondering how on earth you can talk about the joy of living then.
Well, for me it’s more important than ever, isn’t it? Life isn’t over yet, and I´m going to enjoy every last second of it. I´m full of different medications, my face is like a blowfish, but still nothing like an HAE-attack to the face, you know. Now, the situation is what it is and the truth of it is that I have never felt more blessed than today. I would like to get back to that an a little while.
Okay. Let’s talk about HAE in you family. You grew up knowing what your condition was?
Yes, in that respect I was lucky as both my family and I always knew what this was all about. My father always wanted my sister and me to believe we could do anything we wanted – in spite of having HAE. So I never knew anything else, other than to try doing what I wanted, even if my hand or foot was a bit swollen. This was the way HAE mostly showed itself in my case. For my sister it was worse as she had much more painful swellings to the stomach. I played soccer, and I knew that after each summer break my feet would swell after my first soccer practice. But I also knew that after the next practice they would be fine.
I’m not saying this way of doing it is for everyone. However, if there is one thing I’m sure of it is that HAE patients have to fight harder, be better, be stronger and more engaged than others. And this can be hard, because we often know a bit more about HAE than most general physicians.
Yes, we love them and we hate them, don’t we? They are the bearers of both the good and the bad news. Yes, you have HAE. Yes, there is medication. You might have to inject it into your bloodstream yourself. It may cost you money – is your insurance good?
In the Scandinavian countries we are very lucky as we have good reimbursements. However, now that I am in fact dying – of cancer, not of HAE – I all of a sudden realize a few things: HAE patients in China, Russia, Ukraine, and a number of other countries are in my situation. They can also die tomorrow, in a few months, next year. This is a horrible insight, honestly. And it makes me want to fight harder for our fellow HAE friends, my extended HAE family. We must never forget how lucky we are, and never stop fighting for all the others who doesn’t have the benefits that we know in for instance the Scandinavian countries.
I know that HAEi is doing a lot worldwide but we as patients must never stop supporting and helping as we best can. Our knowledge is very valuable.
How do you cope with the situation you are facing?
Well, in all this happening to me humor is my number one weapon. Let me assure you – it’s not even good humor. I sometimes lose my sense of hearing, and my sister who was driving me around – they won’t let my drive anymore, how fun is that?! – and I said to her that it was sometimes nice to not hear everything. It made us laugh quite hard. Stupid humor releases tension in a difficult time and it feels liberating. It keeps us from crying. Believe me, I’ve cried my share too, but I’d rather laugh.
I remember a few years ago, I met a Dutch brother and sister with HAE at a conference, and we had a marvelous time discussing how HAE Olympics would look like. These were some of the exercises I can remember we thought could be suitable: 100 m with a swollen foot; Longest vomit; Javelin with swollen hands. There might have been a few drinks involved in this, but I never think anyone of us ever laughed so hard.
My point is that laughter ignites my spirit – and engaging in HAE makes me want to fight for those less fortunate.
Being together with other HAE patients is like being with family to me. I never feel more understood than when I’m with other people with HAE. One of the saddest things about this is that I’m leaving them. I hate that! But I love the way we take interest in each other, share our stories, laugh at that joke that when our lips swell “we have natural fillers”. We must never stop having fun with this serious disease. We are not getting rid of it anyway, are we now?
In you opinion, is it possible to make family members that are not HAE patients see this condition from a somewhat more positive side – to laugh along with you?
Well, we as HAE patients might worry much about it after all and there is no doubt that the ones in our nearest family often worry more than we do ourselves. Naturally, you’ll have to be sure to assure them when you are fine.
How can HAE patients create more understanding of the disease?
We are all HAE warriors in our own way, and we must never ever be afraid of telling health professionals or others what HAE is. It’s the only way to create understanding and acceptance of this strange and rare thing. It’s the only way. So go to your heart, find the strength, lean on your friends and family, and fellow HAE friends and fight. Fight to be whatever and whoever you want to be. And remember to laugh in the face of HAE sometimes, tell yourself that HAE cannot define who you are. Let your spirit do that.
So, back to why you feel blessed?
Indeed. I have all my HAE family that understand my situation, I have lots of love in my life, I try to spend and enjoy every day to the fullest – I just have to be open to take it all in.
And you spend some of the little time you have left being a HAE warrior?
We all should, you know. Be warriors for HAE, and back up any patient, doctor or family member who needs it.
To all the HAE patients, I would really like you to think about this: If you woke up tomorrow without fear of anything at all, what would you do? You have a choice.
Benedikte Hellevik’s story was published in November 2015. She died in May 2016.