A Look Behind the Scenes

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.

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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.

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.

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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!

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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.

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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.

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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.

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Deb Segelitz
Deb Segelitz was born and raised in Pennsylvania, and is astounded to find herself living in the Scottish Highlands. Equally surprising to her is that she now has a small business restoring and selling old fountain pens. These two facts have convinced Deb that life is either beautifully random, or filled with destiny created by someone with a sense of humor. She hopes the fine north state residents will accept her as an honorary member, since she has some cousins in California who she visited once, but even more importantly because the north state folks she actually knows are fabulous people, who are also the reason for her presence here on anewscafe.com. An enthusiastic amateur photographer, Deb is grateful that she lives in a place that's about as point-and-shoot as it gets. Her tortoiseshell cat, Smartie, rates her as an average minion, too slow with the door-opening but not too bad on the food-dish-refilling, and her husband hasn't had her deported back to the States yet, so things must be going all right there, as well.
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41 Responses

  1. Matthew Grigsby says:

    I have admire few people as much as I admire you Deb.  I know the praise isn’t necessary because you’re doing what needs to be done, but you’ve been brave throughout and have still managed to keep your sense of humor.  Please know how many of us here care about you and we send all the good thoughts and prayers we can muster.

    • Deb Segelitz says:

      Thank you, Matt.  Honestly it’s friends like you who keep me going, always there with support and love.   So thanks for being such a lovely friend! 🙂

  2. Erika says:

    I’m sniffling like a babe here.  Thank you for laying this all out, since I didn’t want to ask any intrusive questions but I was trying to piece everything together.  I hope you keep laughing together.

    • Deb Segelitz says:

      Thank you, Erika.  It seemed like the right time to put it out there, rather than be vague about such a big part of our life together.

  3. Cathy A says:

    Deb,thank you for sharing your love with us. It’s inspiring and beautiful. My thoughts and prayers are with you both for Sem’s continued health.

  4. EasternCounty says:

    Blessings on both of you from across the water.  A whole host of A New Cafe readers are adding their thoughts and prayers for Sem’s well being.

  5. A. Jacoby says:

    Sniffling? Heck, I’m just flat out boo-hooing!!

    Deb, as usual, this piece is so beautifully written but more than that, it is so beautifully lived. A paean to everything true and honest love should be. I wish you both well, and for Sem a miracle. I know, I know, you’ll say you’ve already had your miracle when you and Sem found each other . . . . but maybe, just maybe,  we can be timorous enough to ask for a second one for Sem.

    Love and blessings and strength to you both.

    • Deb Segelitz says:

      Thank you very kindly 🙂  Unfortunately miracles are in short supply, and I no longer hope for them, but a life as well-lived on hemodialysis as possible is a fervent hope of mine, for Sem and for us together.  Many thanks for your good wishes!

  6. A. Jacoby says:

    Oh . . . and, and usual, your photography is (to use a much over-worked word) STUNNING! I love the blue gate . . . it has so much to say.

    • Deb Segelitz says:

      Thank you!  I really like that blue gate, especially when the snowberry is all entwined in it like that 🙂

  7. Deb, this column is so raw, honest and beautiful.

    Thank you for sharing the back story to your love story with us. You know we are rooting for you and your dear Sem.

  8. Cathy says:

    Dear Deb,

    Thank you for sharing your story with us. It’s a beautiful love story that gives a depth of meaning to the physical struggles. My thoughts are with you and Sem.

    Also, the photography is just so lovely!

  9. Kat says:

    Dear Deb,

    Thank you for sharing. I’m so glad that the two of you found each other. Your love for each other is deep and you take good care of your beloved. You are in my thoughts and prayers. Your photos are wonderful.

  10. What an inspiring love story – thank you for sharing it.

  11. Jorgib says:

    Deb, what a beautiful story. No, really. You write so beautifully and your photography is wonderful. It is a beautiful story in that you and Sem have such a close, touching relationship. It’s a beautiful love story – real, not fairy tale. I will include you and Sem in my prayers along with other A News Cafe members. I’m so glad you shared.

     

     

     

     

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  12. Steve Towers Steve Towers says:

    Being relatively healthy—not perfectly healthy, but well enough so that health problems aren’t central to your life—is an enormous blessing that none of us should take for granted while it lasts.  Sem is lucky to have you.   Good luck to both of you in the coming years.  Continue to take pleasure in the small moments—some of which you capture and share in your sublime photos.

    • Deb Segelitz says:

      Thank you!  Kidneys, like general health, are things people really never think of until they stop working.  While we now see health as a luxury rather than a right, I think it’s good in a way that healthy people can just live life *not* focusing on the fact of their health.  It’s a blessing for sure, to have health… but I think it’s also nice for those who don’t have to give it a second thought.

      We’re definitely good at appreciating the little things!  And I’m glad you like the photos.  It’s a photogenic sort of place, these lovely Highlands.

  13. Anne Gibbons, a Glesca Lass says:

    Deb, this is such shocking news and I can’t deny, the emotion that’s lingering with me is that “helpless rage” in learning that the docs could have said something so many years ago. I hear too much of those kinds of stories about the old National Health medical philosophy. It’s changing now, but I never could understand the self-protection the docs indulged in…being too afraid/ill-equipped to deal with the psychological pain which arises in discussing real life…and death… issues with their patients.

    I so admire your hopefulness in the future  you and Sem  still plan on together. It’s the first time I’ve seen a photo of you both  and there’s a soul-mate connection shining through it. As you described: if ever a partnership was meant to be, yours is it!

    God Bless you both.

    • Deb Segelitz says:

      Thank you, Anne.  To be fair, I have learned from so many other patients that the whole “not telling the patient their kidneys are failing” thing is actually (and unfortunately) common among general practitioners, worldwide.  So many people from so many countries could tell similar stories to Sem’s.  There seems to be a sort of unspoken consensus among GPs that “oh the patient is headed for dialysis anyway, it’s not worth mentioning until their kidneys are functioning below 25%” which is maddening because in some (many?) instances, a person can stave off dialysis for quite a while if they have the right information and guidance.   How many years of dialysis-free living has Sem been robbed of (and countless others) because of that misguided thinking?  We’ll never know.  But in all fairness I can’t blame the NHS. It’s too common a theme among the kidney patients I’ve gotten to know, from all over.

      Sem and I feel very lucky to have found each other.  We simply “fit” – neither of us is perfect, but we’re perfect for each other 🙂

  14. Ginny says:

    From your previous writing you answered what I felt you hadn’t been saying.  You have done it with acceptance,  compassion, and most of all, with love.  Love for each other.

    God, I am sure, has blessed you and Sem to have found each other, no matter what has happened too soon after you met and made your love permanent.  May He continue to bless you, through the years ahead.

     

  15. Tom Losch says:

    Hey Deb!…..
    Great story!!!………..as usual.
    You guys look so great together!!
    Miss you!!

    All of our life’s memories that lead up to this very moment – hopefully allow us to appreciate all which we have.
    And, I must say, the Man upstairs has been very kind to you and yours!!!

    Stay sweet!!

    TomAss

  16. Amy Driskill says:

    Merely a spectator in the beautiful journey of your life and all of the valleys you have walked through makes me proud to call you friend.  You are so strong in your weakness.  The love you share is beautiful and yet makes my heart ache for you.  I pray you have more good days than bad in the years to come.

  17. sandie says:

    Thank you for putting life in perspective by sharing your story…as you know when things get rough what holds us together  the fact that some have it harder. Your story was my harder…my prayers and thoughts are with you,

    • Deb Segelitz says:

      I’m glad you enjoyed the article, Sandie, and that it helped.  I never really can buy into the “someone always has it worse” way of trying to deal with things, because in my mind I can’t help thinking “but someone always certainly has it better, too!”  And that just makes things a bit more depressing for me so it’s not an effective way for me to cope – better to just not compare my/our situation to anyone else’s at all, since each person’s situation is so unique and so important to their own lives anyway.  But that’s just me, and how I have to look at life 🙂

  18. Terrie says:

    My husband and I just returned from Scotland a week ago.  It was very magical.  We loved the Highlands (as far north as Fort Augustus–not very far north, I know) and Isle of Skye.  We got lost on our way to Glencoe and ended up in Glen Nevis.  It was one of our favorite spots. In Edinburgh, a young pregnant woman gave us her mother’s email and said we should go there (way north), that she would take good care of us. 🙂

    I am sorry that your husband has a kidney problem.  We heard a few complaints from older people who had health problems.  There seemed to be a different level of care the closer you were to London.  The young pregnant woman was very satisfied with her health care.

    Your love story is a joy to read.  Thank you, Terrie

  19. Jon Lewis says:

    Both Scotland and Ireland are high  up on my bucket list, as I am a fan of the culture and I have some ancestral roots in both countries. Following your rich and descriptive tales, and taking in your superb photography, only increases my itch to travel. I am so sorry to hear of your husband’s challenges but I applaud the grace and courage you both exhibit as you move ahead in your journey. Wishing you both the best that this crazy ol’ world can offer.

    Cheers,

    one of your many fans

    • Deb Segelitz says:

      Thank you, Jon!  I hope you get to this part of the world one day!  Until then, I’m happy that I can give you glimpses of at least my little corner of Scotland 🙂

  20. Denise Rotellini says:

    Poignant and beautifully written.

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