When I started writing for A News Cafe it was my intention to focus on village life, local residents, and the history and culture of the Highlands, with my “personal” life coming second. Recently, though, some of you have read between the lines in some of my articles and have perceived that there is more going on than a simple, quiet Highland life. I don’t like being cryptic or coy so I think it’s right at this point to tell you a bit about the biggest challenge my husband and I have faced here in our Highland Hideaway. So that I don’t bore you all to pieces, after this I will once again focus mainly on ex-pat life, and the characters and experiences to be found here in the far north of Scotland. But for today… here is what’s happening behind the scenes of our village life.
About six months after my husband and I got married, we realized something was amiss. Sem, who once strode around the shores and hills for hours on end became increasingly tired, cold, and – inexplicably – itchy. We didn’t know what to make of it, but three months after that, all became clear. On a sunny March day in 2009 we first heard the words ‘kidney failure’ and ‘dialysis’ in connection with Sem. We were told that there were some decisions we were going to have to make, probably within about two years. Our idyllic dreams and hopes, indeed our whole future together, changed in the space of one 30-minute hospital appointment. We were in shock.
I could tell you about the despair of two later-in-life newlyweds who thought they would still have lots of “healthy” time together, or about the helpless rage we felt when we became aware that Sem’s kidney failure was known to his doctors since the mid-1980s, yet none of them ever actually told him about it… but what good would it do? Life has to go on and what’s done is done. We raged, then absorbed the anger, and then tried to just get on with things.
We quickly learned more about kidneys and dialysis than we ever thought we would need to know. I joined support groups on Facebook, and even helped to ‘grow’ one into a very good and supportive group indeed. I’m proud of that but also grateful to be part of it for our own sake; we’ve learned more from patients around the world than we ever learned from Sem’s renal team, and the things we’ve gleaned from patients’ experiences have literally saved Sem’s life a few times. Consultants know their stuff, but patients are the real experts in many respects. Other than my mother, being as supportive as she could be from 3,000 miles away, and Sem’s good friend locally, we had little support in those early years. I hadn’t lived here long enough to develop any friendships, and in the beginning I only told a few online friends because Sem is such a private person. It was isolating and lonely and those were very hard years. They are still hard years, now.
A hospital ‘selfie’ taken before Sem’s inconclusive kidney biopsy. We are smiling but our eyes tell the truth.
Because of our remote location it was suggested to my husband that he try peritoneal dialysis (PD) which is done at home, with dialysis done via a peritoneal catheter in the abdomen through which dialysate was filled (it’s basically sugar water – who would have thought?), then drained out again after a certain amount of time, taking excess fluid and toxins with it. I won’t go into technical details beyond that; suffice to say that while it isn’t perfect, PD works, and we managed pretty well from September 2011 when Sem started PD.
Because the kidneys affect just about everything else, besides Nephrology we have also become too-well-acquainted with Cardiology, Hematology and occasionally Dermatology and Endocrinology. Because of Sem’s lung problems, the Respiratory unit is a regular feature in our lives as well. Ever-more-frequent medical appointments were the reason we bought a car last year, and why it was so critical for me to pass my driving test. Sem’s good friend, mentioned above, has driven us to nearly every appointment over the years, but he is not well himself these days and the multiple monthly appointments were beginning to wear him out. It is a 140 mile round trip to the main hospital, and the more-local northern hospital where we sometimes go for clinic appointments is still a 90 mile round trip. There are limits to what one can ask a friend to do, even such a good friend as Al.
Most recently my ability to drive us where we need to go has increased in importance as well. In early May, Sem developed peritonitis (we don’t know why). Antibiotics did not clear it up and the result was surgery to remove his peritoneal catheter, necessitating the switch to hemodialysis. He’s still got a long way to go; his recovery could take up to six months. It brought home the fact that our fears regarding general anesthesia are well-founded – his lung problems make it very risky. He pulled through, though he had too many moments when he thought he might not. It has been a dark few weeks for both of us.
And so, things change again. Life now will revolve around the 90 mile round trip to the northern hospital where there is a small hemodialysis unit. Ironically, years ago and well before he knew his kidneys were failing, Sem campaigned hard to help keep that small unit open for kidney patients in the north. Thank goodness he and others prevailed, otherwise it would be that 140 mile round trip thrice weekly to the main hospital instead!
Lest you get the wrong idea, our life is not one gigantic pity party. Maybe a few mini ones in my lonelier moments, but on the whole we have a good life together. We are happy, and more days than not there is laughter in our home. There is love and contentment and the ever-present wonder that we somehow found each other, and just in time, too. If our meeting and marriage had been delayed by just one year, I may not have made it to Scotland at all. Immigration laws changed the year after I moved here, some of which would have made it impossible for us to be together especially after Sem became ill. I got here in the nick of time, and I will always be grateful for that.
When we first began telling people about Sem’s illness and that we were doing dialysis at home quite a few of them said to me, “Wow, Deb, you never signed up for this!” But they were wrong. When I vowed to love and cherish Sem in sickness and in health, well right there I signed up for this, didn’t I? Did we expect this to happen? Few people do. Do I wish that things were vastly different and better for my Sem, and for us? Of course. Do I regret one single day of the past eight years of marriage, even with all that has happened? Not for one second. I am right where I need to be, and more importantly right where I want to be. With my love, by his side through everything.
When all of this began I offered him a kidney (heck, I’ve got two), but he thanked me and declined. Since then we’ve learned he can’t have a transplant anyway – his lungs would likely not survive the long transplant operation. So hopefully dialysis will see him through many more years to come. He has endured so much, and he continues to do so with grit, stoicism and determination. I treasure every day we have together – even the tough ones, of which there are many.
Too often I hear of couples being torn apart by chronic illness, but Sem and I are a team in everything. I wouldn’t say that all of this has made us stronger as a couple because I don’t think that’s possible – we have always been solid. What it has done is confirmed what we have known all along: I’m for Sem, and he’s for me, and nothing changes that. He is my heart, my star, and my life, and I still get a giddy rush of helpless love when I look at him, even with all that has changed for him personally and for us together. Although our life has veered off drastically from the way we thought it would be, it is still a life I love, with the one person who makes it all worthwhile.
Sometimes I ache for those first six heady months we had together here in Scotland. They seem to belong to another life, in a time that was filled with limitless possibilities and unending days of joy, exploring windswept hills and making up for lost time, neither of us ever having loved so intensely and beautifully before. The life we have now, though somewhat limited and much less carefree, is no less a beautiful one, and so much of that is down to my Sem, and how he pushes on and does not give in.
I don’t know how he does it… I’m just incredibly glad that he does.
