More Family Illness, and It’s Complicated

In the past year, we’ve lost a cousin in my age range and her mother, and last week my dad’s lady friend from his Sunday School class.  Actually, two were in the last few weeks (the visitations and funeral for two of them are this coming weekend).  Now, an uncle has been diagnosed with advanced cancer, and while things are still uncertain about his treatment recommendations and prognosis, it doesn’t sound all that great.  I still hope that there is something that the docs can offer him.

The first three people I described were wonderful, kind, beloved, compassionate parts of the family- whether actual family or ‘just’ a close friend.   The latter is not seen as a kind, compassionate person.  Yet I feel horrible that he is having to face all of this.  His wife died from cancer a few years ago (she was very much loved).  My cousins and their families are also having to deal with this.  I’ve only found out what a jerk he can be in the last 8 years or so.  I didn’t have to grow up with him.  I did have his older sister as a mother, and while she wasn’t known for being nasty, she wasn’t the same as a mom as how her students described her as a teacher (she taught for many years).  She was cold and distant at home.  As a kid, that’s all I understood.  I didn’t understand why I couldn’t have the warm, caring teacher as my mom.

I had to get to a place where I could try and see some reason for why my mom was the way she was.  I knew she loved me; that was never in question.  I didn’t, however, know if she liked me.  I knew that feeling from the time I was two years old. She wasn’t always nice to me.  I felt like I was in the way.  But as I got older, I got so tired of being resentful, that  I had to try and see her from an adult perspective, not a hurt kid, and make some attempt to understand her.  And when I did, I found out how broken she was. She had had two newborns who died within the first two weeks of life (two different pregnancies) just three years before adopting me.  She was terrified of losing me.  The attachment issues were from a place of pain, not because of anything to do with me. It would have been any kid…   Figuring that out released me from so much pain and resentment.  Her brokenness hurt me, but it had nothing to do with me.  That wasn’t the only issue, but it made sense regarding how she parented.  She wasn’t intentionally cold and distant… she was scared.  And she did ‘do’ a lot of things for me… I just never felt much of an emotional connection.   It’s really hard to explain.  She wasn’t a bad person by any means… she just didn’t know how to deal with her pain, and bond with a  new baby at the same time, with no frame of reference about how it’s ‘supposed to be done’…  nobody talked about feelings back then.

My mom’s and uncle’s  mother had been orphaned by the age of six- first her mother when she was less than four years old, and a couple of years later, her father died.  She had attachment issues (that she has discussed with me several times) because of that trauma (she was packed off to a new country with only one of her three brothers).  She told me she didn’t like to get close to people, though she always came across as ‘connected’ with my cousins and me, from what I can remember- but then I wasn’t raised by her either.  She was also ‘broken’.  And doing the best she could.  She couldn’t pass along what she didn’t have.

They do the best they can with what they have to work with, and sometimes that isn’t enough.  It just isn’t enough sometimes – but it’s all they have.

If I had any contact with my uncle, I’d want to  let him know how sorry I am that he’s going through all of this.  That wouldn’t excuse him from any of the emotional pain he’s caused, or the horrible things he’s said to/about me.  But if I stay bitter, that just hurts me.  I forgave him ages ago (that’s between me and God, not the uncle), but we have no basis for a continued relationship.  He hasn’t been a part of my life since he called me “human debris”, and said he was “ashamed to be my uncle” (fine, buddy, it’s done- you’re off the hook) after fabricating a nasty story about me that didn’t happen.  He’s a horrible bully, and is known for that character defect.  But he’s also facing some really rough stuff right now, and while I don’t want him in my life, I also don’t want to ignore the emotional torment he’s in right now.  I owe him nothing, but I owe it to myself to not be unkind in return.  I won’t like myself much if I respond that way- and I might not have a lot of time to let him know that I do care that he’s going through so much.

It’s  confusing in my head .   I don’t like this family member, and yet I can’t imagine how scared he is (and he’s still family).  He’s run off a lot of people, and it’s got to feel pretty lonely- especially compared to the way I’ve seen the other three who have been lost this year be surrounded by friends, family, co-workers, and loved ones to the point where  limits were placed on visiting/calls at times.  I don’t wish facing the end of life essentially alone (or at least not liked much) on anyone.   Yeah, people make their choices about how they treat people, and there are consequences with that.  Their ‘targets’  can only take so much crap before they have to cut ties to have their own lives not be toxic.

But I have to make my choices about how I respond, especially with something so serious.  I don’t want to have regrets in five years about how I responded.  I’ve given a message to a cousin who will relay it to him, offering my sadness at what he’s going through, and genuinely praying that whatever results from this, he doesn’t suffer (not my exact words, but the message is there).  If I could box his ears, I’d beg him to make some attempt to let his kids, and anyone else he’s hurt over the years, know whatever it is that he needs to take accountability for, and whatever amends he’s capable of.  It might not be what anybody needs, but it might be all he is able to offer.  Sometimes, that has to be enough… someone who is broken can’t give more than they have.  It hurts, but it’s not personal.

Goodbye, Kathy….

My cousin’s Life Celebration event is happening next Saturday (3-29-2104).  She died from neuroendocrine colon cancer on March 2, 2014, after a horrendous eight plus month battle.  She fought hard.  She had so many complications from the cancer, as well as the expected miseries of chemotherapy (which nobody really anticipates, because any prior frame of reference is just far too inadequate).  She wasn’t able to catch a break during that whole time, from a month or so before she was diagnosed until she died.   But her support system was amazing !  Her mom and brothers (and their entire families) were there as much as possible. I am still in awe of her co-workers and friends who never stopped caring, or offering some type of transportation, meals, or other ‘actions’ of support.  I was so thankful she had that. I wish I could have done more.  I wish I could be at the Life Celebration to meet so many of her close friends and co-workers.  My own medical issues prevent me from doing an all-day-away-from-home thing with the equipment I have to have.  So, I’ll have to be there in spirit only.  SO, I write, and hope that I don’t dishonor my amazing ‘editor-of-textbooks’ cousin with inconsistent verb tenses and other grammatical horrors 🙂   Emotions and tears are messing up my self-editing a bit.

When I moved back to my hometown in very late 2002, we reconnected at the legendary family Swedish Christmas Eve party.  That was the beginning of us becoming good friends, as well as cousins.   We e-mailed and talked on the phone periodically, and it was always as if we’d just been in contact the day before.  We reminisced about past Christmases and various relatives, and laughed a lot. She was always so supportive about the myriad of medical issues I’ve gone through, eventually ending up disabled.  As an RN,   I was able to help out when there were things going on medically  with family members (including Max, her cat), as well as herself.  I’d try and explain the crazy confusing medical things.  And then came May 2013.

She called me before her trip to San Francisco, telling me of some troubling symptoms, and asked me what I thought, as she’d seen one doctor who just wasn’t giving her the idea he really heard her.   I had my usual “piss on him” reply, since doctors work for the patient, and if it’s not a good fit, the doc is the one who needs to get the boot.  I suggested she ask her primary doc for a referral before the San Fran trip to get an appointment scheduled, which she told me she planned to do.  My memory of what happened when is blurry from that point on, since Kathy began having intense pain, with frightening changes in symptoms not that long after her first appointment with the new doctor.

When she finally got the diagnosis, I suggested she send her first full colostomy bag to the jerk doctor that blew her off (she cracked up at that one 🙂 ).  Then, I started looking things up on the internet about neuroendocrine tumors.  I’ve worked in many different areas as an RN, but not specifically on any oncology floors (where the chemo and cancer-specific care takes place).   I can take care of post-op (surgical) cancer patients in my sleep… but when I saw the information online, I just cried.  I had to reboot myself, so I could be more useful for her.  The statistics were grim, but very few things in medicine are absolute, and with her otherwise good health and age, I really hoped she’d be able to beat this, and be one of those in that very low percentage of survivors.  She was offered some treatment options.  Kathy never had any other intentions.  LIVING was the only option she considered.  We never discussed anything about her dying, aside from a few statements and questions at the very end.

Something really important began to happen over and over again during her battle.  Whenever she felt something wasn’t quite right, or the explanations given by the doctor just didn’t seem to fit, she’d call me because she knew something wasn’t right.  I noticed  how incredibly well she knew her own body, when she was having to get used to SO many ‘new normals’.  She just knew when things weren’t right.  AND, she did something about them.  She didn’t wait for something to completely fall apart before finding out what could be done to fix it, or at least figure it out. If what the doctors were saying just didn’t feel like what she was experiencing, she found one of them who could explain what was going on in terms that made sense. Doctors can be so good at blowing through explanations that sound like Greek dipped in Latin, leaving patients more confused or just unsure; add chemo-fog to that, and it gets even worse.  More people need to follow her  example- keep asking until you know.  I told her that I was going to blog about that at some point, and she was fine with it.  I also promised not to throw her identity out into the universe in the blog (as well as not name too many others’  names). Thankfully, she was given a name that still allows me to recognize her, while honoring her wish for anonymity.  Those who know her will know that this is about her.  And her amazing fight.  And ongoing strength in the midst of hellish situations.

I was SO glad to finally see Kathy last Christmas, at the family Swedish Christmas Eve party.  I’d seen photos of her, looking quite well for someone going through so much.  But I had to SEE her for myself.  We took a bunch of photos (most of which have people looking off in various directions at a LOT of different cameras 😀  I’m so glad we all have those photos… ).    We talked.  And she was hurting.  It was  new pain, which worried me.   When she got home, she had it checked out, and that pretty much started the beginning of the end, as I saw it.

In early January, I noticed she wasn’t replying to e-mails, which was not like her at all (I have hundreds of e-mails between us during her cancer battle), or writing much on CaringBridge herself.  She called a few times, telling me what was going on, and what else she had to have done TO her.  And then, she was told there was nothing left to do.  I was in contact with her mom and brother during this time as well.  I knew things weren’t good before she was ready to tell me herself.  I never wanted her to think I’d given up, or to bring something up that she wasn’t ready to talk about .  She never wanted to know that living and surviving weren’t an option… but at some point, it has to be acknowledged and dealt with.  It’s not something that is ‘wanted’ information… but it is necessary for the best possible care to  be made available.  I’m thankful that she had someone looking out for those painfully hard things.  She had to deal with it in her own time.

That started the last of our phone calls.  During the earlier ones after treatment stopped, she said she didn’t feel like she was dying.    She wanted to find some alternative options, and why not?  She was still in ‘fight mode’.  She told me that if she just wasn’t so tired, she thought she could do some work from home like she’d planned.  In the next few weeks, she sounded more and more tired. And then we had  the heartbreaking phone call when she asked me what she had done wrong that she wasn’t going to be able to live.  I told her that she had gotten a really mean, cruel cancer, and nothing she had or hadn’t done caused it. Then, in an almost childlike tone  the last time we spoke, she very gently asked me why I’d been able to survive the cancer I had (a very lethal form of leukemia unless treatment is started very quickly; it has a 30-day survival rate if no treatment is done).  There was no bitterness in her voice, but what sounded like a painfully desperate attempt to understand the incomprehensible. She knew she could ask me anything.   I told her I’d just been very lucky, and agreed when she said she felt like she’d been dealt a really harsh hand.  And we both said “I love you.”.

Shortly after that phone call, I talked to her mom and found out that hospice was  in the picture.   Her brother and sister-in-law called me the night she slipped away.  I knew from the caller ID who it was, and what they were going to say.  I think I just bawled and sounded like an idiot. I knew it was coming, and it still hurt like hell.  I can’t imagine what this has been like for those who have been right there since the day she was born, or spent the better part of the last decades knowing her.

It’s been three weeks today, and it’s still hard to believe she’s gone, and on the other hand, it feels like she has been gone for so long, maybe because life as she  knew it stopped last summer.   I feel so privileged to have had Kathy in my life, and as family !  I’m humbled by her courage and strength during some indescribably difficult situations.  She personified so much good.   She always looked for the things to smile at, and had a laugh that I can still hear when I remember good times.  When I found individually packaged slices of Spam on Amazon, I had to pause and remember that I had nobody to send it to… that she wouldn’t be able to laugh at that.

I know I’m not alone when I say that my life was better having known Kathy.

The Legendary Swedish Christmas Parties of My Youth

My mom had friends who wanted their sons to marry me so they could get an invite to our Swedish family Christmas parties.  When I was a kid, they were THE family party to look forward to every year.  My paternal grandmother had  a dozen siblings, and while not all of them were in the Chicago area (or even in the United States- or alive), most were at least within driving distance.  They rotated whose home hosted the dysfunctional chaos, er…uh, party. In those days, it wasn’t a potluck- the hostess did all of the cooking.  That in itself was a major undertaking. Add 50-60 people in various ages and stages of sobriety to the mix, and it was a big deal!  I loved it!   One year, dad was anxious about driving in the bad weather… he’d heard about some folks who had skidded off of the highway (not the bazillion who got through).  Mom and I started bawling.  Dad ended up taking the plunge, probably wanting to risk ending up in a ditch vs. dealing with being blamed for ruining Christmas that year.  We got there and home just fine.

My dad’s parents both came over on a boat from Sweden in the early 1920’s.  They were on separate trips, but left from the same place in Sweden (Goteborg), and on the same ship (Drottningholm), though different years. Grandpa thought that anything was a party; he had a great time en route to a whole new life in America ( and later, just mowing the lawn). Grandma wasn’t as fortunate on the trip. Her many siblings were of some comfort, but at Ellis Island, they ‘lost’ one of their sisters in the fray and later found her at the hospital on Ellis Island.  She later was taken back to Sweden for medical reasons, and died as a young adult. On the train from NYC to Chicago, somebody (not family) slit their own throat in the train bathroom and they had to watch blood flow down the aisle of the train.  They were young- some just kids.  And they were terrified. Nobody spoke English. But they all brought their ethnic cooking and holiday customs with them.  All of the various great aunts and uncles, and assorted cousins of parents, second cousins, first cousins once removed, and so on all reaped the benefits of those celebrations.

The Christmas Eve celebrations began in late afternoon at someone’s home.  The women of the generation that came over on the boats were generally involved in helping with the final cooking and food prep, and getting the table filled with food that was served buffet (or smorgasbord) style.  The ‘middle’ generation (those born in the United States to those who came over on the boats) were busy getting caught up on the year’s events….and drinking glögg (more on that in a minute). The youngest generation were running amok. There were basically two ‘sets’ of ages to this third group. I was in the  younger group.  The older group was 3-12 years older than I was (give or take a couple of years).  We just had fun and enjoyed seeing each other.

Before getting to that smorgasbord, there was a tradition of making a sort of semi-sedate conga line, everyone holding the waist of the person ahead of them, and making a chain throughout the house, moving to the song ‘Nu År Det Jul Igen’ (It’s Christmas Time Again).  It was mandatory. Only one person really knew the words to the whole song (one of grandma’s sister-in-laws), and the rest of us mostly mumbled to the tune.  It is a catchy little number!  If anybody has seen the movie ‘Fannie and Alexander’, it’s in there. And the song itself is  on YouTube.


The smorgasbord  was a precursor to the high protein diet craze. Most carbohydrates had a rough time getting on that table. There was always ham (and for the host family, ham for days in various incarnations), Bondost (Swedish farmer cheese with caraway seeds), ‘korv’ (pork and potato boiled sausage), pickled herring, sylta (think ground veal jello- not my favorite), Swedish meatballs (a very special recipe that I still make),  lingonberries (tiny Swedish cranberry-like fruit), and the other permitted carbs: hardtack (thick rye cracker) and limpa (Swedish rye bread), some baked brown beans that are like ‘regular’ baked beans (I hated them, and still do), a green lime and pear jello mold (another ‘I’ll pass’ item), and boiled potatoes. Must have boiled potatoes.  Carbohydrates were more like condiments than a food group for the holiday dinner…except for the cookies later in the evening.  It was an amazing meal that I looked forward to every year.

At midnight, lutefisk was served (with more boiled potatoes, a cream sauce, and nutmeg).  There are many jokes about lutefisk, and for good reason.  It’s cod that has been soaked in lye, and then dried (to preserve it back in the days before refrigeration or freezers for long journeys on ships, or just because; during the winter, living near the Arctic Circle made for some iffy fishing opportunities). Lye is the same stuff used to make soap, oven cleaners, and drain opener. The fish had to be rinsed in water for days (water changed daily) to be sure it didn’t create an opening between the esophagus and neck when someone ate it as the lye ate through the person.  Sounds yummy, eh?  It was/is so popular in Scandanavian circles that it is sold in plastic bags, packed in some of that final stage of rinse water, ready to heat and eat!  Once boiled, the texture is similar to gelatinized rubber bands. With fish flavor. Strong fish flavor. Are you hungry now?   I haven’t had the stuff for decades, but I did eat it as a kid.  Those who have read some of my other posts know that my food intake was very restricted when I was a kid; I’d eat just about anything when I was turned loose at the Christmas party. Except the cloyingly sweet baked beans, and that green jello mold. Not going near those.  Had to save room for cookies 🙂

For those who don’t know about glögg, it is a mixture of brandy, port wine, some ‘warm’ spices, orange rind, almonds (had to have one in the bottom of each cup, or some horrible Scandinavian evils would find their way to the unlucky imbiber) and Everclear…or basically the kerosene of drinkable alcohol. To make it so that it wasn’t a form of euthanasia, it had to be ignited to burn off some of the alcohol.  That just meant that more was consumed.  There were some bonafide alcoholics in this family.  For the most part, they just got rowdy and loved everything ! I don’t remember any mean drunks… and for a long time I didn’t even realize why Santa didn’t show up until 2-3 a.m..  One of the first generation had to sober up enough to dole out the presents in a Santa suit, and it had to be one of the older generation, as the middle generation had kids who would miss a parent during the gift opening.  Us kids would be dozing off, and jerking ourselves awake when we realized that we were still waiting for Santa to show up. They were long nights ! But the sort of dysfunction that made for amazing memories 🙂

The glögg did have some unpleasant effects; one year a neighbor of the host and hostess knocked on the door to inquire as to the identity of the person who was face planted in the snow pile out front, with his arse in the air…my dad and one of his cousins went and fished out Cousin B from the pile of snow in the front yard… Good times !

Eventually, someone would come stumbling down the stairs shouting ‘Ho, ho, ho’ and laughing in a jolly manner. All of us kids would suddenly perk up.  Often, someone was walking closely with ‘Claus, and I now wonder if it was for stability should ‘Claus start having trouble with his balance and gravity.  To me, it was the start of an amazing thing. It fascinated me that whatever I flagged in the JCPenney Christmas toy catalog  at grandma and grandpa J’s house would show up from Santa !  (I was the only grandchild of my paternal grandparents).  Grandma seemed to have some direct connections to the North Pole. (And Grandma J never told Santa I needed socks or undies). Imagine 6 of us ‘younger’ kids and 4-5 (depending on the age cut-off) of the ‘older’ kids all opening gifts at one time, in their respective ‘groups’ of families. Gift wrap, bows, and boxes would be coming down blizzard style. It truly was a magical time, especially when we were younger.  Looking back at the old photos, it’s obvious who was stuffed into the Santa suit; as children, we were mesmerized to be in the presence of the ‘real’ Santa Claus.

Every year was fun. It was a holiday that was steeped in ethnic traditions that made it special, and unlike anything I’d see on TV or heard friends talk about. The real reason for the season was sprinkled into the evening at some point, but Jesus’ birth was not the main focus of the celebration.  My parents and I always celebrated church Christmas events, so I was very aware of the meaning of Christmas; the Swedish party was the heritage part of the season.  I loved those parties. We still have smaller versions of the old days, with family who is in town (or at least nearby), and some years, those who have moved away will join in. Now it’s a potluck, which makes it nice to be able to contribute, and not as horrible on the hostess.  I’ve been limited in actually being at the parties due to the heat intolerance with the dysautonomia, but with the ice vest I now have, I’ve at least been able to go to the last part of the evening  It’s much earlier in the evening  than it was when I was a kid, and the glögg is enjoyed in moderation (I can’t drink at all for medication reasons).  I make the meatballs to send with my dad- same recipe that we had at the old parties. The ‘dance’ before eating is still done.

It’s still a very special part of the holidays, and wonderful to remember the ‘old days’. So many are no longer alive, but thanks to those decades of  incredible family parties, they are still there in spirit.

Edit:  Christmas Eve 2013 was bittersweet… while the old traditions were still there, and our heritage was celebrated in familiar ways, it was the last Christmas for one of my cousins, who had been battling cancer since the summer.  At Christmas, I was still hoping things would be OK eventually, but I was also concerned about some new things she told me about.  She lost her fierce battle on March 2, 2014.   Her mother (dad’s first cousin) died later in 2014.   She was the hostess of the Christmas Eve parties for many, many years.

And, in 2016… it will be much different this year without dad.   SO much family history was tied up in the Swedish Christmas Eve party…. and it will be missed.   I’m so thankful for the incredible memories.  ❤