last week

My uncle and one of my cousin's triplets (Jane, I think?)

Picture stolen from my cousin's blog.  It is exactly how I will always remember Uncle Ron.

Last Tuesday I woke up to a phone call from my sister Rachel who was in CA with my family for Christmas.  She told me that my Uncle Ron died the night before.
Uncle Ron was my dad's older brother, the brother right above him and his twin sister.  He had ALS (Lou Gehrig's Disease) with which he had been diagnosed about 5 years ago. 
ALS stands for Amyotrophic Lateral Sclerosis, which sounds a lot like Multiple Sclerosis, and in fact has some similarities to MS.  ALS causes the degeneration of the motor neurons which control voluntary movement.  MS doesn't directly affect the nerve cells, but rather the myelin sheathing around the nerve cells.  As the myelin is attacked by the immune system, scarring occurs (sclerosis) which eventually interferes with or completely disrupts nerve function.  However in MS, all the nerves are susceptible, while in ALS only the motor neurons are affected, for some reason.  This means that ALS patients retain all their cognitive abilities, memory, and personality traits.  Many MS patients experience cognitive effects (although I haven't so far as I can tell, which is one benefit of having MS that primarily affects my spine.  Most of my lesions are in my cervical spinal cord, and not in my brain.).
Anyway, I was diagnosed with MS shortly before I found out about my uncle's diagnosis, and so in a way we've traveled this road together.  His journey ended far, far too soon.
I really loved my Uncle Ron.  He has 33 nieces and nephews just on my dad's side, and yet he knew me and always knew enough about my life to ask me relevant questions and to make me feel like I was special.  His house was always a fun place to be, although I can't imagine how disruptive it must have been to have all the Russ Frandsen kids there.  :-) 
His oldest daughter is almost exactly my age and we grew up together.  Well, she was in Utah, and I was in California, but I was always really excited to spend time with her during the summer, and she came to the cousin's camps that my mom organized.  I was always a little jealous of Jill because she is so pretty (all of Ron's kids are exceptionally good-looking-- my beautiful aunt Shauna is Japanese, and her and Ron's genes combined in the perfect storm of attractiveness for all 3 of their kids :-)), but I couldn't really be jealous of her because she's also the nicest person you'll ever meet.  Their whole family is just plain wonderful.  They are the epitome of "good people," and I love all of them.
During the darkest of my infertility days, my aunt Shauna was an angel.  She understood my heartache like no one else did, it seemed, and spent lots of time listening to me and talking to me.  And as it turned out, Jill ended up with fertility troubles, also, and my twins and her kids are all "lab siblings," products of the same fertility clinic.  She has GGB triplets and two younger boys, all born within 5 years, so for a while she had 5 kids 4 and under.  Jill is amazing.
My uncle's ALS first manifested in his hands and arms, and he lost the function of his hands and arms first.  My MS has primarily affected my legs, so for a while we used to joke that between the two of us, we made up a fully functional human being.  :-)
I've thought about my uncle thousands of times over the past 5 years.  Every time I do, I am grateful for the use of my hands and arms, even while my legs are largely useless.  Losing the use of your legs is a major inconvenience, but it is nothing compared to losing the use of your arms.  Think of all the things you do with your hands and arms, and imagine how you could accomplish much of anything in your daily life without your hands and arms.  Legs can be largely replaced by a wheelchair, but there is no wheelchair for your hands and arms. 
But my uncle never complained, and I never saw him without a smile on his face.  He knew for 5 years that he would not see his grandchildren grow up, that he would not grow old with his wife, that he would not enjoy the longevity that ought to have been gifted to him by his own parents (now both strong and alert and vigorous in their 90's).  But he accepted each new loss with equanimity and humor.  I don't think I complain too much, but I am frequently annoyed and aggravated by my limitations.  And too often humor is my very last reaction to frustration.  He was an amazing person and an absolute hero to me.  I've had some hard times since my MS diagnosis, and he has been an example of hope to me.  I've looked to him and seen him happy and contributing, and an important, vital part of his family, and that has given me hope as I've worried about what might happen if my disease takes another turn for the worse.  If he can stay happy and contributing and vital through his decline, then I might be able to do the same.  If he can navigate the cognitive dissonance between the tragedy of his terminal diagnosis, the knowledge of his inevitable decline and death, and the happiness there is to be found in family and friends and music and books and the simple pleasures of life, then maybe I can do it, too.
Anyway.  When I found out about his death, which was peaceful, although far too soon for anyone, I was filled with mixed emotions.  I can imagine his liberation as he was freed from his body which had become a prison.  But I am so sad that I didn't get to see him at Thanksgiving to tell him in person how much I love him.  And I am heartbroken for my cousins who have lost their beloved dad, and my aunt who has lost her husband, and the 6 grandkids (and all those that aren't even born yet) who won't have this awesome grandpa in their lives. 
I flew out on New Years Eve to go to his funeral in Salt Lake City.  I went from 70-something degree Austin to SLC which experienced a high of 15 degrees that day.  :-)  It was cold and snowy!  But the funeral was everything you could hope for a funeral to be.  My aunt and my cousins spoke and they all made me cry and made me love my uncle more and made me so happy to be a part of this incredible family.  I just about couldn't stand it as my aunt and cousins said their final goodbye to Uncle Ron and closed the casket lid.  I remember doing that with my brother and it still feels like a hole is being ripped inside me when I think of it.  How do you say goodbye to someone you love so much? 
This has been a refrain of a few blog posts of mine recently, and I'm no closer to an answer.

My mom and dad had to drive back to L.A. shortly after the funeral, and I stayed the night at my Uncle Tracy's house (the brother just younger than my dad and his twin sister).  It was a bit of a wrench of emotions as I left the funeral and arrived at the happy chaos of my aunt and uncle, their 6 kids, 3 spouses (and one almost-spouse, I think!), and 7 1/2 little children.  They were having their family Christmas celebration that weekend, and it was so fun.  It was especially fun watching the antics of all those little kids, and not having to have any anxiety over behavior, because none of them were mine!  I got great pleasure watching my cousin's 4 year old twins and remembering with fondness those days when my twins were younger (and a certain measure of relief that those days are over!).  My dad's side of the family is a family of multiples!  My grandma had 2 sets of twins, there are another 2 sets of twins among the grandkids, and 2 sets of twins and a set of triplets among the great-grandkids!  I stayed up until well past 1:00 AM, talking with my cousins and ringing in the New Year.  I love all my cousins and it has been too long since I've been able to hang out with them. 
My aunt Pat is amazing.  Between about 3:00 PM when I announced I was going to crash their family party, and 9:00 the next morning when they were opening presents, she managed to procure several presents for me to take home.  I felt very spoiled.


In the early afternoon, my brother Benjamin drove me back to the airport and soon (too soon!) I was back in Austin.  It's good being back with my own family, but it also did my soul good to reconnect with my cousins and extended family.  Plus my doctor uncle diagnosed my Shingles saving me a trip to the doctor, a co-pay, and another trip to the pharmacy, as he called in my prescription to a local store with a drive-through pharmacy (love that, need to find one around here...).

I have such an awesome family, and I know how lucky, lucky, lucky I am.