Nice side-parts today. Right. Hedi: We feel lucky and we’re grateful to Seamus for being there for her. And they have this wonderful relationship of love and respect and we’ve seen that now almost a year. I’ll just feel better once I eat. Yeah, so when’s the last time you took your medicine?
And it seemed like the disease is not a part of the picture. Or maybe the disease is an experience that brought them closer together and it’s wonderful to watch as a parent.
When I was diagnosed, I wondered if this was maybe too much for a new relationship and I told him, you know, this is not what you signed up for. I also don’t want you to feel like you have to stay in a relationship with me because of what’s happening. He really stood by me.
He slept by my hospital bed in a cot, every single day keeping me company and taking care of me. That was a really amazing and touching thing for me.
You get to know a lot of someone by traveling they say. But if someone’s unwell and you have to be there at their side, that happens and it either falls apart of it doesn’t. It’s Thursday June 15th.
I think there’s a change that happened when Suleika became sick, in the sense that this is such a powerful thing to happen to someone that you love. It brings such a clarity and I think even one that can really blow people back because in some ways even though you got to this point, through these terrible circumstances, everything’s so clear.
We’re in a relationship of less than a year, it’s brought us together but it puts an incredible strain on both people. And there was a day when, when her hair started falling out, that was kind of like woah, this is gonna get hard.
And there we were in the bathroom of her little hospital room and a lot of her hair had fallen out but what I think happens to a lot of other people and happened to her is that you have to pull out the last bit of your hair. And I had to help her pull out these last clumps of hair on her bald head.
And that’s, you know, that’s when it gets very real. I remember feeling so full of fear and kind of um that feeling you have when you’re about to cry, and um, trying to hold it in. And I’d be in the hospital and have to leave her hospital room. That feeling doesn’t go away quickly, doesn’t stay away, it comes back later, and that’s also hard. And yet I wanted to be there and she wanted me there.
And these are very difficult and kind of tricky situations to deal with. You know, everything from not only meeting her parents for the fist time but meeting her parents under these circumstances. It’s a very personal, intimate, the most deeply personal thing for a family.
With the news of her diagnoses came Seamus, who we had never met. She had just started talking about it, it was really that new. It was clear that if she was so happy with Seamus we would welcome him as well. You know, our house is big enough to have everybody live here.
I remember being with Seamus, researching bone marrow transplants and I saw that one of the permanent side-effects was infertility. The big decision for me was about whether I was going to freeze my eggs or to freeze embryos that have been fertilized with my boyfriend’s sperm. It felt like a really big step, especially so soon in a relationship. But I think we both could imagine ourselves potentially way down the line, having children together.
So you know, I was given a few minutes to make that decision and in the end I sort of reluctantly chose eggs because it seemed like the safer bet. Illness does weasel its way into every aspect of your life and every relationship no matter how good it is.
Four days before Suleika entered the hospital, Friends threw the party for her and Seamus.
I think this relationship has helped Suleika psychologically get through this phase of the disease.