In 2011 I posted a story from Christopher Cooke who had Dilated Cardiomyopathy and was waiting for a life changing transplant heart transplant. Chris is still on the transplant waiting list and through all the ups and downs of waiting for that new lease of life we often overlook the people who are also going through the situation too, the loved ones. This update to Christopher’s story has been written by his girlfriend Marlene and certainly brings back alot of memories for me as i’m sure it will for anyone who has been or is currently going through the same thing whilst someone close to them is waiting for that life changing call. And i do hope Chris’s call comes soon. – Az x
My name is Marlene Jørgensen, and I’m in a relationship with Christopher Cooke who since the age of 17 has been suffering from a severe heart condition known as Cardiomyopathy. I’m writing this now for everyone to get a better picture of how serious illness is coped with from a loved one’s perspective. Getting a deeper understanding of how it is to deal with serious illnesses that leave your body helpless in defending itself is crucial, and when you know that about 10,000 people are on a waiting list for a new organ, then think of the people who are closest to those 10,000.
Depending on the individual, those 10,000 who are suffering and fighting a daily fight within themselves, are sharing it with family, friends and loved ones. As an example you can say that every single one of the 10,000 is close to 5 people each, with whom they either live or just confide in. So we get to 50,000 people in the UK who are affected daily by events they can’t do anything about to change. They are affected by worries and sorrow, and have nothing to comfort them other than the wonders of modern medicine. You have roughly 65 million citizens in the UK, so 50,000 is just a tiny fraction in comparison, but doesn’t at all mean that it doesn’t need attention.
65 million is such a large number, it’s impossible for me to comprehend. Where do you put them all? I’m from Denmark. Tiny little country with 5 million citizens but I still have difficulties imagining that many people living here.
This brings me to my first challenge: Long Distance Relationship.
Most people have said to me they could never do it. Well, I feel like I didn’t have a choice. You don’t choose who you love, it just happens. Being so far away from someone you just want to spend every waking second with, is absolutely devastating. Being so far away from someone who lives with an LVAD, on medication daily and needs to rely on electricity to function within the normal parameters that his disease restricts him to, is a whole other level of devastation. It’s intensified by hundreds. If he gets “the call”, meaning that there’s a heart waiting for him to have, then I have absolutely no shot at getting there in time. The thought that I can’t be the last person to tell him I love him before he goes into surgery is just unbearable. As things are now as I’m writing this, I’d have to rely on phone calls to know if the surgery went well, plus I’d want all the follow-up information about his recovery. In other words; things that would be simple for other couples to do, is for us impossible. When we finally get to spend time together, it can only be 7-14 days at the time, but those are counted as the best days of my life. The rest of the year I’m only waiting to get to go again. We just really enjoy each other so much and it’s the greatest of contrasts in my head when one second I think about how happy he makes me, and the next it’s “Will I ever see him again?”
I feel horrible when I think like that, I feel like something is wrong with me since I can’t be in a positive state of mind when it’s most desirable, which bring me to Worries.
Christopher and I have way too many worries for people our age. We share the worries of his illness, the present, the future. On top of that comes all the worries everyone has in daily life. Money, job, education.
To me education has become a luxury-thing. I could get one here in Denmark, but it would take minimum 3 years, but I’m done waiting around to be with him. So that’s something I feel like I have to put aside for a while.
Christopher will sometimes tell me he’s in pain. And those pains are highly unpredictable. It could be anywhere really, an arm, leg, foot, knee. Or sometimes it’s numbness. For the sake of not worrying so much of why his arm is hurting or why his lips are numb all of a sudden, I wish I knew so much more about his condition at the level of any cardiologist. Not knowing is just terrifying and I can’t do anything but to tell him to see his doctor, to which he either replies “I’ll just wait and see.” or “Nah, I’m sure it’s nothing.” Frustrating as that is, I can’t make him, and it is his body, so I have to trust him if he feels like it’s nothing to bother with really. I just have to take comfort in the fact that he knows his body the best and most of the pains he experiences aren’t new to him, so with painkillers at least I don’t have to worry that he’ll be too affected by it.
The Future is a split term for both of us. We often talk about that one fine day when we’re living together, and not just living together but making a living. We’d get a dog, have jobs, pay rent and complain about the bad weather, like any other normal couple. The pain-filled past of hospitals, worries and waiting lists will be long gone. Christopher has family living in Australia, and it’s a shared dream that we might one day go and live there ourselves. So many joys ahead. But where there is happiness, sadness follows. They often go hand in hand. Like our conversations of the future, I admit, we talk about the good future most often but at times it feels like we have to at least address the darker one too. The darker future is the one I hate to the core of my soul. I can’t even think of it without crying so this is very painful to sit and write down, knowing everyone can read it, especially Christopher.
In that future, as you might imagine, things just don’t go the way we all hope it will. Death is something no one wants to think about and is considered only to be a worry of the elderly. I consider this to be one of the reasons people are having trouble signing up as organ donors, yet the fact is, that we’re all going that way, we’re all headed there, and some faster than others. So as Christopher is on a waiting list, and being aided by an LVAD you might think of it as him having been forced upon the fast-track in life. Not like he’s trying to win a game, he’s trying to beat it. Beat the odds.
I think of Az, the creator of Donnas Dream, all the good things he has done to promote organ donation in the memory of Donna Mansell and that’s despite going through losing the love of his life. I can’t for one second imagine what it’s like to go through a loss that great, but if I try really hard and force myself, it all looks very grim and I know that I would be in a very bad place for a very long time. It would change who I am and it would take away reason to go on. I know Christopher wants to hear that I’ll be alright in the end, and I probably will, but I know that it would take years.
So how does one recover from having sunk into the depths of one’s imagination?
You hope that it won’t come to that, and you hope hard. They say hope is the last thing a person can lose, but in Christopher’s case I hope for him aswell, so maybe that counts. He can’t lose hope twice, so I’m always ready to lend him some when he feels like he’s running out. Hope is what drives us, and the reason we could ever have allowed ourselves to begin our relationship in the first place. So for that I am forever thankful.
It is also my hope that maybe in writing this, readers could get a different perspective on the affects of organ shortage. And I invite you all to consider the possibility of signing up.
At the end of the day, when I’m done feeling sorry for myself, and for Christopher, I consider myself to be one of the luckiest people in the world.
I got to fall in love with the most wonderful person I’ve ever met…
…and he loves me back.
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