“Life is what happens when you’re busy making other plans.” ~ John Lennon

Or in our case, life is what happens when everything around you crumbles.

I don’t know what we were thinking in December. I can’t really remember that far back. Maybe we thought it was our first Christmas in our new house (exciting!) or maybe we thought it was the beginning of a tradition. I can almost guarantee we weren’t thinking about where we are today, less than three months later. We weren’t thinking it was our last Christmas with Alan (John’s dad). We weren’t thinking it would be our *only* Christmas in our new house. We weren’t thinking about dementia or Medicaid or over half million dollar homes.

I knew I was unhappy. That was certain. Every day was a heavy lift, from getting out of bed in the morning to caring at all about what happened during the day. Depression is like that – sadness is like that. Pervasive, consistent, ebbing and flowing.

Anyway, I couldn’t even tell you the timeline of how things happened. But we confessed to each other that we weren’t happy. We daydreamed about moving home. And then, somehow, we made it happen? We drove down and looked at houses. We found a builder (our old builder, nonetheless) building beautiful homes close to where we used to live. We sold our current house (in about 36 hours which was WILD!). We have movers booked. We have a plan. It feels good. Life feels a little less … awful.

Because amidst all the moving decisions and day trips in snow squalls and disappointing house tours, we were dealing with something that had no silver lining. And it feels a little too raw and too real to even write about. Because death is final. Because everything that happens leading up to death and after death is confusing and heartbreaking and desperate and never ever enough.

The entire fabric of our lives changed shape in nearly every single way. It has been a brutal start to a year.

But out of that darkness has come a true appreciation and understanding of what home is. Of what support networks look like (and their utter beauty). I don’t think I ever knew before, but I know with absolute certainty now, that home is Chester County. And our life, the one we spent seven years building, was not worth leaving. I’ve heard people use lots of different words in regards to the decisions we’ve made recently. But I can promise this – I don’t care about what anyone else thinks. Deep in my soul, in the fiber of my bones, I know this is the right decision. And even though it has been exhausting and will continue to be hard and stressful — there is no other stress I’d rather have than the stress of fighting for my home. Fighting for our life and for what brings us joy.

Yesterday was a long day and I thought about blogging (I think about a lot of things 🤪) but by the end of the night – after our day took several sharp left turns – I crawled into bed, hoping for sleep and not much else.

Last night was my first night of migraine medication.  I have spent years trying to avoid medicine but my life has been eaten away by the pain and the inability to function clearly so when an option was offered to perhaps prevent the pain, I took it and didn’t hesitate.

I don’t like pharmaceutical drugs (not even recreationally- actually, especially not recreationally) but there comes a moment when there doesn’t  seem to be any other option.  I’ve discussed my headaches with my MS neurologist, my functional medical practitioners, my chiropractor … basically everyone.  And while everyone (minus my neuro) is all for holistic healing, no one has offered me any solutions that actually work.

It’s hard to explain the debilitating nature of pain unless you’ve experienced it, and the average Joe has not experienced sustained, untreatable pain for any length of time that would allow grace and understanding.  Or the painful choice to take drugs despite every fiber of my being hating the idea.

Side effects are drowsiness (no prob, I have MS and am tired constantly!) and blurred vision (ummmm…not as great considering I just had laser eye surgery last year ….).  I think blood pressure as well, but that could be the pain meds he prescribed for the inevitable headache that will come.

Anyway.  I have mixed feelings about western medicine and patient care (I mean, there is no real patient care – there is drug prescribing and rushing through symptoms and not acknowledging that it’s a person sitting there in the form of me … but I digress).  I told my physical therapist about it this morning and she offered an alternative treatment so I’m going to try it (but I’m not ready to give up the drugs yet … the pain is truly unbearable).  I guess I feel optimistic that my headaches are being addressed.  I’m hoping I can begin to feel better consistently and have a normal, functioning life.  (Y’know, for someone with MS).

That’s the update.  Today is Day #2 of drugs.  John is at the farm all weekend.  There is no Lucy so … it’s just me.  And yoga.

Xox, g

I use the expression ‘staring down the barrel of a gun’ a lot.  I don’t know why.  I’m usually not referring to anything life or death.  Just the idea that in the moment, the choice I am faced with feels intense, imminent, incredibly important.  Life changing.

This year has been an interesting year for me.  A year of growth.  A year of grief and mourning.  A year of finding out how to be me without my mother.  It has been challenging.  Rewarding.  Dark.  Hopeful.  Endless and timeless all at once.  I think I both know myself better and don’t know myself at all.  I look in the mirror sometimes and I try to find something — anything — that lets me know that I’m choosing correctly.

Nothing ever comes.  Sometimes I sleep well.  Other times I don’t.  Sometimes I struggle with MS.  Sometimes I don’t.  Sometimes things feel as though they are beginning to make sense, and in the same instant, feel overwhelming, as though I am drowning and watching myself lose grip.

I have gone on interviews.  I have summoned enthusiasm for positions I never had any interest in — directions in life that inspire nothing but the knowledge that I am doing it to get it done.  I have toyed with graduate school – I have applied.  I have wondered what the long con is … what am I working on for what result some day in the future?

Everyone dies.  Right?  If I have learned nothing this year but that, then I have at least learned that.  When I walked down Walnut Street gripping Lydia with sweaty palms, counting the steps, the painful distance of two blocks from my office to the bank … I clearly understood priorities in a way I never did before.  And now, trying to find light in darkness, trying to hear my mother’s voice in a void of silence, I very acutely understand that no amount of love, no amount of wishes or morphine or crossed fingers will change the inevitability of death.

Cancer didn’t care that I needed her.  That my father needed her.  That my brother and her identical twin needed her.  Cancer couldn’t have cared less.  Cancer does not discriminate, it does not show rhyme or reason in its actions, in it’s insidiousness.

And so, nearly three years after leaving my job I sit here, wondering what the point of it all is.  And I talk to a man about a fascinating company.  And I wonder … why?  Why should I pursue that when I really have no interest.  Well, maybe not no interest, but my interest is fleeting at best.  It is superficial.

What should I be doing for the rest of my life … that when I close my eyes for the last time, gives me peace?  And … what can I do within the confines of multiple sclerosis? Tricky question to start, I know … trickier question to answer, given the variables.

I have tried to refresh this blog … so it doesn’t look like the space I created nearly nine years ago.  So it is a new space, where I can come, and scream into the void.  Talk about the things that bring me passion.  Wonder about the big questions for which I have no answers.  I can’t promise anything … I can’t promise daily blogs, or a cohesive thought pattern.  I can’t promise a theme.  But I can promise honesty.  I can promise that when I sit here, and type furiously and with intense focus, it will be the truth of who I am in that moment.  The truth of what I believe and what I am questioning.  Because I don’t really know how to be anything better than I know how to be honest.  (That has been a theme in my recommendations … and perhaps not always in a positive way).

xox, g

Sometimes – and the timing is usually very odd — I feel so inherently like my mother’s daughter. It isn’t often. But I feel her spirit in me, I see her influence in how I live my life and make my choices.  I marvel at how who she was, and how she lived her life, molded my brain and gave me a sense of right and wrong, morality and values, what life is all about.  It becomes very clear when looking at how other people make choices, how they behave and how that is in stark contrast to how I live my own life.

She was sort of marvelous in every way.  And I don’t know how she did it.  How she always found the positive, how she always smiled.  How she contemplated information and offered sane, candid and thoroughly considered opinions about everything.  I think about how much she loved to cook, even when she couldn’t taste food anymore because the chemo had killed her taste buds and left her mouth painful and raw.  I think about her pure joy in discovering new things, or seeing a hummingbird feed in the boughs of the backyard trees.  I think about how much she knew — just, SO much.  I will never accumulate that knowledge, or be able to put it in context and use it to make arguments the way she could.  I think about how many people’s lives she not only touched, but positively influenced.  So far beyond influencing her son and daughter — influencing and helping other people’s sons and daughters, advocating for people whose voices weren’t as loud and articulate at hers, offering kindness and solace for a multitude of heartaches.  My mother was gentle, and deft and could read a room in an instant, could read the people surrounding her, and she made everyone feel heard and seen and important and wise and thoughtful … even if maybe, we weren’t.

She could have been broken.  She could have been angry at the hand life dealt her at such a young age, when her first husband was tragically killed in a drunk driving accident.  She could have harbored resentment and bitterness her entire life (and maybe she did) that such cruelty found her at the tender age of 22. But … that wasn’t the person I knew my mother to be.

My mother was married to my father for forty-five years.  They had two children and they raised us well.  We never wanted for anything, we traveled the world.  They exposed us to so many different things.  I carry all those memories with me every day.  I give my dad a hug, and kiss his scratchy cheek (he has stopped shaving every day since my mother died … I think it is his treat to himself) and I feel beyond lucky for the two people who raised me and gave me the gifts they gave me.  I am inherently my father’s daughter.  That has never been in question.  But when I see my mother’s eyes looking back at me in the mirror, or look down and see her hands typing, my heart swells with such gratitude and love … and pain that she is gone and I (and my brother) are all that is left of her.

It doesn’t matter how much time has passed since we lost her.  It doesn’t matter that time-very insensitively — marches steadfastly forward, and I have to experience things without her.  The pain is real, it is immediate, the sense of loss is one of the real-est things I’ve every grappled with.  Sometimes I need her so much I think my heart will stop beating with the squeezing pain.  I look into the nothingness, into the void, and wonder how I will possibly cope without her to tell me what to do.  How will I continue to move forward without her guidance?  It is an unanswerable question.

And it’s then that I see her in me.  That I feel her voice in my soul.  That I remember that she made me, and that the answers are there.  They just aren’t as easy to find.

Mama Bear, I am doing my best.

xox, g

My mother died on December 30th, 2018.  It was 4.15 or 4.16pm.  I don’t remember exactly.  I was holding her hand.  It was warm but lifeless and her breathing had gotten progressively more ragged as the minutes ticked by until it just stopped.  I was telling her that he was on his way.  ‘He’ being my brother, flying home from Ireland.  I was like a broken record.  “He’s coming Mama Bear.  He’s on his way.  He’s almost here.”  I said that even though he wasn’t almost there.  I didn’t want him to miss her, I didn’t want her to miss him.

But in the end, they did miss each other.  The wheels of his plane touched down the minute her breathing stopped for good.  I know this because my poor husband was sitting in the cell phone lot at the airport, waiting for Dave, waiting to bring him to us.  And he got my text message (yeah, I regret that but at the time, I don’t think I was aware of anything) and Dave’s message that the plane was on the ground at the exact same time.

No one and nothing can prepare you for that moment.  I promise you that.  I like being prepared and I was not unaware of what was happening.  But simultaneously, it’s so much more than your brain can even comprehend or process.  It’s the dichotomy of something irrevocable having occurred but also nothing changing at all.  The rest of the hospital kept on about its day.  Their lives hadn’t ended.  Not like my mother’s.  Not like ours.

I waited at the door for Dave and John because I wanted to be there for my brother as soon as I could be, but also because I wanted to prepare him.  And my Dad & Aunt … they were in the same bizarre limbo I was, just more raw, I think.

Dave is my little brother, but he isn’t little.  He’s over six feet and he’s a mountain-climber, among other things, so he’s strong and solid.  When he came in the hospital doors he looked unnervingly calm.  He was quiet.  Later, I found out that he’d comforted John as John, burdened with the task of telling him that she wasn’t alive anymore, began to cry.  I worry about him.  His stoicism and his distance.  I wonder if he knows how much he means to us, how loved he is.  He’s always so far away.  Literally and figuratively.

Everything changes and nothing changes at the same time.  Lucy still needs to go out for walks and get her breakfast and lunch and dinner.  Her medicine.  I still have MS. I go to yoga.  I do Peloton classes on the bike.  Dave still lives in Texas and tours the country in his Starwagon, living adventures most people dream about – hiking and skiing and camping and rafting….  But she isn’t there anymore.  She isn’t sending me messages or soothing me when I’m frustrated or sad.  She isn’t helping me be thoughtful and strong when I need reminding that life is a gift.

You take things for granted that you didn’t even realize were things.  The comfort of knowing that my mother loved me unconditionally – that she was always worried about me and cared about my life – that she understood and accepted my struggles because she had her own and knew that other people couldn’t understand.  That she never pressured me or made me feel less than – that she supported me and only wanted the best for me.  That she smiled and cradled my face and called me ‘Mousekin’ and that’s all I needed to know that I made her proud.

She gave me recipes in the last six and half years of her life – recipes she used for food that I loved … yorkshire pudding, raspberry fool, Scotch eggs … and delivered them to me casually in plastic, hole-punched sheets (so I could add them to a binder she also gave me) with handwritten notes on them.  “I use this recipe but I use Harvey’s Bristol Cream, not Dry Sherry.  You *can* use either.” “This measurement is in Imperial measurement so you have to adjust the milk portion.”

She was everything perfect and wonderful and she was my ultimate hero.  I feel lost without her.  I feel lost every day.  And some days are better than others, but that feeling of drifting aimlessly has yet to lessen or go away.

Sometimes I’m angry with her.  Why didn’t she have the screenings that would have detected her cancer years before it was discovered, already progressed to stage IV? But I know the answer.  That wasn’t her thing.  Doing tests and staying up on her health.  She lived well, she ate well, she excercised and didn’t smoke.  Discovering she had cancer was a betrayal of having lived a good life.  She felt betrayed.  We all felt betrayed.  It was maddening and unfair.  But it was still true.

Here are some facts.  My Mama Bear survived longer than most people diagnosed with stage IV cancer.  She had a good six years.  She travelled, she laughed, she spent time with people she loved.  She took impromptu road trips.  She never let anyone be morbid about it.  That wasn’t her style.  She told us all, many times, how much she loved us.  She demonstrated more than told us, that she was a fighter.

The end was horrific.  It felt fast but it also dragged out unendingly over weeks.  It felt untrue to her, but how can you ask people who love someone more than life itself to make the smart, level-headed decision?  Isn’t that what doctors are for?  Isn’t it? 

I have bad memories of those days.  I question if I did the right thing or the wrong thing.  Did I leave the hospital too soon?  Should I have stayed longer every day?  Did I say the things I needed to say to her — did she hear me?  There were two or three days when we all had hope, when she opened her eyes and was trying to talk. When physical therapy came in and gave her excercises to strengthen her arms.  I can still see her doing them, fighting to the end.  It brings me to my knees every time.  We took those days for granted.  We thought it would get better.  But it didn’t.  And Dave flew to Ireland and then he had to fly home.  I had to ask him to come home in a text message after hearing that Mama Bear was going to be moved to hospice.  I failed as a sister.  I really did.

I try to remind myself that I am her daughter and nothing can change that or take it away from me.  But something feels like it shifted.  Things that felt close feel further away.  Her Britishness and in turn my inherited Britishness feels false now, as though I lost that when she died.  I lost that part of who I am, I lost that part of my life.  It feels like so many things were lost that day, that moment.  When life with her ended, and life without her began.

I’ve been told it gets less immediate as time goes by, but it never really changes.  It just feels less raw, less exposed.  I feel like the more time goes by, the more I ache, the  more I miss her and need her.  I feel angry that I lost her and broken that she is gone.  There is a darkness and a silence that will never change.  Not ever.

I think about that last day, those last few hours, as we all watched the clock and stroked her hands and talked to her as though she could hear us.  I *should* have just told her I loved her.  I should have told her it was okay, that we all loved her and that if she was too tired, it was okay.  But I didn’t say those things.  I just kept saying that Dave would be there.  I think I thought if I kept saying it, she would keep fighting.  And in a way, I think she did.  But then it just got to be too much.  And I know she was tired.  But selfishly, I just want my Mama Bear.  That’s all.  I”m not really sure how to do this whole life thing without her.

I was inspired recently to revisit a book I began reading a few years ago and never finished.  I bought it because Gwyneth Paltrow wrote the forward (and I love Gwyneth Paltrow) and the book was supposedly about weight loss.  Something I was struggling with at the time.

It isn’t about weight loss at all.  I mean, it is.  But it isn’t.  And I will confess that I never finished it.  But the ideas within it I carry with me every day.  Because the book is about … um, enlightenment.  Sort of.  I’m struggling to properly articulate what Dr. Sadeghi writes about.  Because it all sounds cheesy.  And yet, to me, the book is so far from actually being cheesy I really don’t want to do it a disservice.  So I’ll use Dr. Sadeghi’s words — the book is about self love.

When I began my job a month ago, my District Sales Coordinator handed me (and everyone on our team) a book called “The Energy Bus.”  I happen to love books like that, so I was looking forward to cracking it open.  But before I had a chance, she and I talked about it.  And I heard myself talking about Dr. Sadeghi’s principles with such conviction I knew I had to go back and finish “Within.”  (**As I read both books, I am in awe of how similar many of their ideas are — just presented in slightly different ways and in different contexts.  It makes me smile.)  

I don’t know that I have always tried to evolve as I’ve grown but I think, looking back, it happened without my conscious awareness of it.  John (the hubs) always teases me that early every year I go through my “Self Help” phase.  I find a book and read it cover to cover in a matter of days and then try to apply principles and new practices to my (and John’s!) life.  I find comfort in it.  Trying to be more aware, trying to be better.  Trying to understand life & myself more.  I loved so many ideas in Dr. Sadeghi’s book (y’know, the part I read).  He talks about self love, yes, but he also talks about energy and the power of our mind & heart.

When you have an incurable disease like mine (or maybe any struggle, really) there’s a different perspective about health.  Or, to be more precise, wellness.  And more and more, I read articles about the power of positivity in the workplace, in life, in healing.  Its pretty profound.  And I can say from personal experience that where my mind is at very much affects my physical wellness.  My first neurologist handed me information on four different drug therapies when I received my MS diagnosis.  He told me to read about each one, and come back and tell him which medicine I wanted to take.  He said he didn’t like picking medicines for MS patients because he believed that if I believed in the medicine there was a greater chance of it being successful.  In retrospect, that was exceptionally powerful and has (clearly) stayed with me. And the medicine I picked did work.  It just had rough side effects. The therapy I am on now my current neurologist prescribed to me three times before I went in and had my first infusion.  And I only went in after sitting in an office with him for hours debating the pros and cons, discussing the potential health risks.  I left believing it was the best option for me and would work.  And it has.

I guess what I’m getting at, in a very fractured manner, is that I have deep faith and belief in the power of our thoughts.  Being positive and optimistic are part of the battle.  Every day. I can physically feel the difference when I am down or feeling discouraged.  I can feel it if someone near me is full of angry, negative emotions.  We are all energy.  And our energy feeds off other’s energy.  Everything is interrelated.  Its profound to me, and mind-blowing, and gives me infinite faith in life.  It helps me in  my journey every day.  To make better, smarter choices.  To eat better food.  To take care of my body.  To focus my mind on constructive, positive, enriching and nurturing things.