The Wedding Dress

Many little girls dream about their wedding day, marrying their Prince Charming and most importantly, their wedding dress.  I was one of those little girls.  I was engaged when I was 19 and fell in love with a wedding dress that I hoped to wear.  It was simple for the time, a soft jersey with an empire waist, A-line.  It had a high neck with beading which continued down to a placket.  It also had long sleeves.  No lace.  It was simple, like how I perceived myself at the time.  That wedding never happened.  I never had the chance to try on a wedding dress.

Fast forward seventeen years to when Tom and I were engaged.  An important part of the wedding planning is finding just the right dress.  I started shopping nine months before the wedding.  My mom didn't live locally so my shopping buddy was my bestie Mary Beth.  I went shopping with her six years earlier for her gown.  We went to the standard bridal places and since they only stocked tiny sample sizes, I was never able to try on a gown.  Mary Beth was my personal mannequin.  But nothing we saw came even close to what I thought I wanted, even though I didn't even know what that was.  I was a bride in my mid-30s (considered old in the 90s) and most thought the appropriate dress would be a pale pink fitted suit.  That wasn't what I wanted.  I also preferred more tailored clothes back in the day so I wanted something more subdued.

On a cold December Friday afternoon, Mary Beth and I drove down to Orland Park, a suburb about 40 miles southwest of Chicago.  In that little town was a bridal salon that represented a local designer, Jon Bradley.  We didn't know it when we made the appointment but the owner of the salon, Andrea, was the same woman who was the salesperson who helped Mary Beth when she purchased her gown. Her headpiece was also a Jon Bradley design.

When asked what I was looking for, I could only describe what I didn't want--something that looked like a 20 year old would wear.  I wanted something that fit my personality.  Andrea brought out several beautiful samples, fabulous one-of-a-kind gowns that Mary Beth modeled for me.  They were all beautiful.  But nothing was speaking to me.  I was worried that I wouldn't find one.  Andrea gave me a sideways gaze and said she had one more, it was from the previous year's collection so the sample was a little beat up.  Perhaps I'd like to look at it.  When she pulled it out of bag, Mary Beth and I looked at each other and just knew.  As I held it up in front of me in the mirror, the Hallelujah Chorus started to play on the radio.  It was the song we were using as our recessional.  It was my dress. I looked at Mary Beth.  She had tears in her eyes.

Since the cost of the dress was above the budget I felt that I had to discuss it with Tom before committing that much money (it was a lot).  I worked with Andrea to make some modifications to bring the cost down, but it was still a lot.  Tom, in his usual fashion said, "If its what you want, you deserve it.  Get it."  And I did.  I love the dress.  We used to joke that it cost so much we should just stuff it and use it as a couch.  Tom said it was so big that he would need a hand truck to move it.

It was so much fun to wear and to dance in.  It was also a challenge to maneuver in.  But I loved it.  I still love it.  After the wedding I had it cleaned and stored it in the closet.  I would put it on occasionally for the sheer joy of wearing it.  I had a special area of our closet designed to hold it.  I had always hoped that we would be able to have a renewal of our vows and I would get to wear the dress again.

Two years ago I did a photo shoot of the dress on our anniversary.  I noticed, for the first time, that the detail on the trim was a rose.  A rose.  I had the dress for over 20 years.  I adored the dress and I didn't realize until 2017 that the trim was a rose.  Talk about not being observant.  Geez.

On the occasion of our 25th wedding anniversary I wanted to honor the day and wear the dress.  It was to be a prop in documenting what it feels like to be a widow on such a milestone.  And that's what I did.  I tried the dress on and it was too big.  I had to have it taken in.  Not something the seamstress had heard very often--a twenty-five year old dress that need to be taken in, not let out.

The dress holds the energy of that day.  And the memories.  It is precious to me.  And it is still just as gorgeous.  Perhaps not as timely, but gorgeous just the same.  Its 90s big. And its me. And us.

On the Occassion of our Twenty-fifth Wedding Anniversary

Tuesday September 24, 2019 will be the twenty-fifth anniversary of the day we married.  It is an auspicious day, both joyful and deeply sad.  It marks the day, that day, twenty-five years ago, that we united in marriage.  A marriage that brought us both incredible love and joy and commitment and humor and devotion.  A marriage that at times humbled us to our knees with human frailties and lifted our hearts to incredible joy.  A marriage that was a spiritual journey for each of us as individuals and both of us as a couple.  A marriage that taught us what it means to be really committed to another human being, how to love deeply and accept each others' shortcomings even when those shortcomings drove us to distraction and frustration.  It was a marriage that ended far too soon, after only twenty years on the physical plane.

I always wanted to be married.  I was engaged when I was 19 to my first love.  My parents divorced the next year and things did not go well for the next decade or so on the relationship front.  Tom had been married and divorced.  I met him about a year after his divorce and he was still deeply hurt.  He said he never wanted to marry again.  I had to chase him until he caught me.  We were together for six years before he was ready to try again.  The one thing I know is that he never regretted taking the plunge again and that he believed it was the best thing he ever did.

I am so saddened about this milestone.  And angry that we didn't get to twenty-five.  I feel cheated.  It isn't fair.  I think that goes without saying.

I wanted to mark this occasion.  To honor the day, the beauty of it and the sorrow it now holds.  I still have my wedding dress.  I LOVE my wedding dress.  I had a photo shoot done with it,  The photo captures exactly what I wanted to show.  The beauty and the sadness, the loneliness, importance.

The day we married it was raining.  In fact, it was raining for the entire week prior to our wedding.  And we had planned an outdoor wedding.  Fortunately we had a plan B, moving the ceremony and the reception inside.   The Redfield Center at the Grove, designed by George Elmslie, a follower of Louis Sullivan, was a architectural gem for our intimate wedding.

I think I remember every moment of that day, and what I have forgotten can be recalled by our wedding video or any of the many photographs taken.  My father, who had waffled at coming to our wedding, did not attend the rehearsal the day before.  My sister-in-law urged me not to worry about the situation.  I told her I was getting married no matter what.  My parents both came to the wedding and were cordial to each other, it was the first time they had seen each other since they divorced eighteen years before.  I remember seeing Tom's face as I walked down the aisle.  I felt so loved, by my family, our friends and most of all, the man that I was marrying.  It was a beautiful wedding.  And as we left that evening, the rain had ended, the moon had come out and there was a low ground fog over the meadow in front of the house.  They say rain on your wedding day is a sign of good luck. One source says it signifies the cleansing of tough times or sadness in your past. True for me  Another source indicates it is because it symbolizes the last tears that the bride will shed for the rest of her life.  I don't know about that.  I've cried gallons of tears before Tom's death and particularly after.  We had a happy marriage, built daily by the minutia of life.

The 24th is a special day--a day I will always remember.

Turning the Corner . . .Or is that an oncoming train?

There are moments when it takes my breath away when I realize how much grief and loss have demanded of me, and how much is continued to be asked of me.  I look backwards four and half years and am amazed that I am still standing.  I've proclaimed mightily how hard I've worked to recover, and it is true.  It has taken everything that I have to get this far but unfortunately the damage from the loss is more than emotional, but incredibly physical as well, something I was not expecting.  The last year and a half I've had to deal with aFib (brought on by the stress of the loss), and a surgery to treat the aFib.  I had made the commitment to stay in our home and to update it last fall, which I did.  But then I developed a late onset rare complication from that surgery.  Two and half months to get a diagnosis (the physicians in the practice had never seen this complication in my type of surgery).  I was pretty ill.  I kept soldiering on, doing the best I could to work and live life, but there was nothing left in the tank.  I missed the holidays with my family.  The treatment is long and the pace of improvement has been glacial.  Two months into treatment and I was feeling like it would never ever get better.  My doctor reminded me that it was a long treatment and improvement would be slow, but after being ill for four months, it felt like it would never get better.  I kept hoping that one day I would wake up and feel better, a lot better.  But it didn't happen.

And then, last week, I had a long busy week.  I did my best to parse my energy to get through a 60 hour work week, which a month before would not have been possible.  I realized I felt better, I had more stamina.  And although I was worn out after that long week, I wasn't debilitated.  I could breath better.  I'm not fully recovered, and that will probably take a lot more time.  I didn't realize how ill I was until I started to feel a little more like myself.  I also acknowledged that I have just passed through the most difficult weeks of the year for me, the anniversary of Tom's death followed closely by my birthday--both accompanied by a lovely cold.  There is a heaviness to those days, and it was a difficult anniversary this year.  In the last month I finally turned off Tom's cell phone and his car has been rehomed with our nephew.  Two emotional steps.  I feel like I've cleared the decks, that I'm ready to move forward in an entirely different way.  I no longer want to talk about how far I've come (no promises there, though), I want to live how far I've come--and how far I may go.

As I was driving home on Friday night and the thought occurred to me, actually it was a sense of knowing, that the very best of my life is yet to come.  It is an awesome feeling, knowing. The person that I want to most share this with, who would be happiest for me, is Tom.  There is no doubt that he is beaming and saying "that's my girl."

Regrets

Blessing for the Brokenhearted

There is no remedy for love but to love more.  --Henry David Thoreau

Let us agree

for now

that we will not say 

the breaking makes us stronger

or that it is better

to have this pain

than to have done

without this love.

Let us promise

we will not

tell ourselves

time will heal

the wound,

when every day

our waking 

opens it anew.

Perhaps for now 

it can be enough 

to simply marvel

at the mystery

of how a heart

so broken

can go on beating,

as if it were made

for precisely this--

as if it knows

the only cure for love

is more of it,

as if it sees

the heart's sole remedy

for breaking

is to love still,

as if it trusts

that its own

persistent pulse

is the rhythm

of a blessing

we cannot

begin to fathom

but will save us

nonetheless.

--Jan Richardson

Tomorrow (or today depending upon when I actually post this) will mark four years since Tom died.  The week leading up to this anniversary is generally more difficult than the actual day itself.  That day was the culmination of the anticipation of what I knew was coming, but did not know the exact day, time or experience.  And each day this week I have relived the circumstances.  Two days before a hospital bed was delivered to our home.  I asked Tom about it, and he really didn't want to, perhaps because what it meant to him.  I explained that our bedroom was our sacred space and I wanted to keep it that way, that I didn't want a lot of strangers traipsing through it.  He understood and reluctantly agreed.  So began our last two nights together, me sleeping next to him on the couch, him in a bed.  He was so weak and I woke up every 45 minutes to help him.  I was getting cranky from all of the awakenings and then I remembered something my friend, also a widow, told me about the time caring for her husband.  She wished she had stayed in the love.  That clicked into my brain and it changed how I approached the day, I wanted to stay in the love.  So on that Monday morning, the day before he died, I lovingly bathed him and shaved him (he was pretty scruffy) and changed his clothes.  Hospice came by in the afternoon to check on him and tweak his meds.  That evening our niece and nephew stopped by.  As we were getting ready to go to sleep, Tom looked at me and said "I think it is going to be tonight".  He never ever talked to me about dying.  I restrained myself from saying "Don't say that." and instead asked why he thought that to be the case.  He said he was so weak.  I reminded him that his brother was arriving the next day.  I so wanted him to hold on until his brother arrived.  I have only one regret about that night and it is I didn't further the conversation, that I didn't ask him if there was anything that he wanted to tell me.  And that I didn't get a chance to tell him how much he meant to me.  I lost that chance.  I was too busy doing to take care of him that I didn't allow the space for what was really important.  That is what I regret from 1,460 nights ago.  He knew how much I loved him, and I know how much he loved me.

A lot has happened in the last four years  It has been a brutal journey made more difficult with the onset of heart rhythm dysfunction which led to surgery which had a rare complication from which I am still trying to heal.  Tom's death figuratively and literally broke my heart.  I've been in the process of rebuilding my life, albeit more slowly because of recovering from my heart challenges.  I've reclaimed my home--paint and carpet and other changes to make it my home, not our home.  It has been two steps forwarded and one step back.

I find it astounding that my heart has kept on beating these past four years.  Even though it took a left at Albuquerque when it came to its rhythm, it has stayed solidly in rhythm for the last eight months, even with this complication.

When this man came into my life, it changed everything.

Tom

1952-2015

And when he died everything changed again.

Crossroads: I'm Not Afraid to Die, I Am Afraid to Live

December 2018

I am at a crossroad, yet again.  But I think this one is so much more profound.  My heart has taken another left turn at Peoria and I don't yet know what is causing the problem.  After a month of just about every test possible, I have another one scheduled in 10 days.  Hopefully my physicians will be able to determine a diagnosis and a treatment plan.  The potential problems could range from mildly annoying to life altering.  And I have gone down the rabbit hole a few times.  I feel sidelined AGAIN, waiting for another level of healing.  I know there is a strong connection between the emotions and the physical.  I've experienced that to be true more than once.  But this time I have had a hard time connecting the two, in fact I've been a bit defiant in wanting to connect the two.  For some reason I isolated the very real, very physical symptoms of my heart's dilemma from the very real emotions of where I am on my journey now. Clearly I do not do a very job of listening to my body since my heart feels the need to be such a drama queen--making all these big melodramatic gestures to get my attention. The more I think about it, I can acknowledge the emotional in the physical.  This feels deeper, more intense, and more visceral than each layer of the onion that I've peeled since Tom's death.  It is a rope that is all looped and knotted.  And the more I struggle, the tighter it gets.  I didn't think there was another level to go.  I thought I had done all of the work and it was time to move forward.  I guess not.

I have decided to stay in our home for at least another year and to invest in it to make it my own, not our home, but my home.  I had the entire place painted.  I replaced the carpet.  I changed out the window coverings.  I changed out all the door hardware and the electrical outlets and switches.  I changed the color, which I loved, but only slightly.  Furniture has been rearranged, all of the artwork has been changed or relocated.  The house feels lighter and brighter and beautiful and peaceful and mine.  Tom's energy is still here, but it isn't heavy.  I can hear his laughter lightly bouncing off of the angles of the walls and the ceiling.  The love is still infused in the molecules of the house, his protection seeped into crevices.  His presence is here, but in a lighter way, like how he is always a part of my life and my heart, allowing room for what comes next.  It was a huge step for me to take to redefine our home.  And this year I had the desire to decorate for the holidays.  I did not want it to be nostalgic.  I wanted it to be neutral.  I bought a new artificial tree.  I only used ornaments that I loved.  I am happy with the way the house looks, and how I feel in it.

But now I have another conundrum.  There is another level of work I need to do.  One of the things you learn when you walk through a terminal illness and lose the love of your life is that most things just don't matter. I discovered that I am not afraid to die.  To me, death is an acceptable alternative.  But let me be really clear, I do not have a death wish or a plan or any intention of doing anything about it.  What really frightens me is living.  I've said that I'm afraid of living disabled.  But really, I am afraid of falling in love with life. I want to, but I am terrified. For me to be in love with life, means being in love with someone. And being in love with someone means the very real possibility of facing another shattering  loss.  I am afraid I wouldn't survive it a second time, I barely survived it the first time.  If I am going to live, then I want to live fully, ensconced in the joy of it, not marking my days waiting until I feel better so I can participate.  I've spent far too many days over the past four years waiting to feel better.  I do not consider it living, it was survival. I've done the hard work.  I guess there is more to go.  But I am tired.  I thought I was on the precipice of launching into the next chapter, but this heart stuff is slowing my roll and harshing my mellow. My heart is holding me back in a different way this time.  It seems more is being asked of me and I've given so much, I don't know what else there is for me to give.  This next level of work is getting to the very heart of the matter (pun intended). I am tired. But I think I am ready to surrender (or not).  Time will tell.

Surviving the Storm

This so aptly describes where I am right now.  Being back in my hometown reminds me so much of my past, of the beginning of my happy life with Tom.  As I look back at the last four years I really don't know how I even survived.  There were many days when I really didn't want to go on.  There have been awesome people who were there for me, those who altered their lives to help me live through mine. And my puppy dog.  The morning after Tom died I was awaken by her sloppy kisses and knew that this little girl needed her mommy since she had lost her daddy. She kept me going when I wanted to give up.  Perhaps it is sheer stubbornness masquerading as fortitude, or perhaps some strange whisper of hope that I could one day be happy again.  Whatever it is, it has brought me to a new place in my grieving process, another level of letting go of Tom.  There are days when I embrace it as an important step in moving forward.  And then there are days that my heart stamps its feet and yells in defiance "I don't wanna and you can't make me!"  You see my heart seems to have a mind of its own which it has so clearly demonstrated by its funky beat.  We need to get on the same page.  There are so many moving parts in my life right now which will determine what my future may look like and all I can do is turn it over and have faith that the outcome with my best interest will present itself.  

One of those moving parts is my heart's recovery.  It has been three and half months since surgery and I am coming off of my meds.  The next month will tell whether the procedure was successful or if I will need to have a second one.  This weaning period is causing some stress.  Every funky beat, every palpitation has me focused on what my heart is doing and what the future holds.  It is scary stuff.  I really don't want to go through this anymore.  I am now feeling more like myself as I decrease the meds that have kept the ticker on track.  And now that I am on the precipice of my "new life" fear has set in.  It was one thing when my "new life" was a hazy thought in the future, when I had to deal with the business at hand of grieving.  While I will never be "over" Tom's death--it is a part of my life and who I am--the loss has, and will continue to, fade and be woven into the fabric of who I am and not the only thing that defines me. The shiny new life (at least that is what I am hoping for) is more clearly in sight.  And with that comes the fear of the unknown, of the possibilities, of the risks, and of the rewards.  I sometimes wonder if I have it in me, if the last four years have drained me of my essence.  But I think the truth is that almost everything about me has changed.  There continue to be shifts, some moving at a glacial pace, and some like California's earthquakes--unexpected with the ability to quickly shake things up and grab one's attention.  

What I do know is that I am not the same anymore.  There are parts of me that are familiar but many that are not.  I look in the mirror some mornings and I can see the experiences in the reflection of my eyes.  And I wonder how it is I am still standing.  It's pretty awesome that I am.  I expect it of myself while at the same time I am surprised by it.  I don't know which moving part is going to click into place next but whichever part it is, it will take me on a new adventure.  

Parallels

It has been two months today since my heart surgery.  I am recovering well, although not quickly enough to suit me.  We will not know until late summer if the procedure was successful, it takes a long time for the heart to heal and scar tissue to form, which will stop those errant signals from creating chaos in the heart rhythm.  The surgeon wasn't able to complete the procedure due to an anatomical aberration in my heart.  They were able to do about 70% of what they intended to do.  So the odds of a successful procedure went from 90% down to  50%.  If my aFib triggers were in the area that they ablated, the procedure may be successful.  If they weren't, then I may need another ablation later this year.  It will be a much less invasive procedure, and hopefully an easier recovery.

It has also been four years ago today that Tom was diagnosed with appendix cancer.  I remember every moment of that day.  The waiting room, the sunlight, and the shock.  He went in for what was anticipated to be a routine appendectomy.  After six weeks of doctor's visits, we were led to believe that they really didn't think he had this rare cancer.  So we walked into the hospital that day thinking we would get this taken care of, put the scare behind us and get on with our lives.  It wasn't to be.  The surgeon got in there and realized what he saw was what he had suspected and that a more invasive procedure would be needed.  He closed him back up and sent him to recovery.  I remember the surgeon calling me out into the elevator lobby and telling me what had happened.  I was not able to retain my composure because I knew what it meant.  We were about to embark upon a journey we didn't want to be on.  The surgeon  had one more case, and he and I would tell Tom together.  I sat in the waiting room crying my eyes out.  I was alone.  There was no privacy.  The only other person in the waiting room looked at me and said "he's a young healthy strong man".  I just stared at him.  I had no words and no idea what to think or say.  Later the nurse took me back to the recovery room, where they usually don't allow visitors.  Tom was awake and his face lit up when he saw me.  He wanted to know how it went.  I tried to dodge the question, telling him the surgeon would talk to us.  He was insistent.  He saw that I had been crying.  He knew something was wrong and wanted to know.  So I had to tell him.  I told him that they didn't remove his appendix.  I don't remember anything else I said.  And he was pissed off!  Really angry, cursing away the way only Tom could do.  He wanted it done and over with.  The surgeon finally came in.  After that I had to go to the pharmacy to pick up his pain meds.  I had to stand in line, shaking with fear and tears running down my face, to pick up his prescription.  Thinking back on it now, what a brutal, cruel thing to make someone go through.  Let's give you some devastating news and then send you to stand in line to pick up a prescription.  We came home that night, both exhausted and in shock.  We had 200 more days of hospital stays, ER visits, chemotherapy visits, procedures.  Ups and downs.  Hope and despair.  Our world would soon become out of control and all we could do was plod through it, holding onto each other desperately.  Every single memory of the hospital includes the lack of appropriate facilities to support a family going through such trauma.  Many would not even notice it, but as an architect who has spent my career designing spaces to support healing, the irony was not lost on me of having to spend the most difficult times of my life in an old, cramped, outdated facility that in itself made the process more difficult.

I had my surgery in a different hospital in a different town.  But that hospital was also old and cramped and outdated.  My room looked and felt exactly like the rooms in which Tom had spent so many days and nights.  My only meltdown occurred when they transferred me from ICU to Telemetry and they put me in a two-bed room so small I could lay in bed and reach out and touch the person in the next bed.  It was hot and with the curtain pulled I couldn't see out the window and had no idea if it were day or night.  Anyone walking by could look directly at me laying in bed.  I wasn't having it and let them know that this wasn't going to do, that environment mattered and Kaiser's own design standards were for private rooms.  The nurse manager calming listened to me and told me they were having a discharge that afternoon and would transfer me.  I was grateful that they did.  I had a friend purchase boxes of See's candy that I could give to the staff.  I didn't want them to think I was an entitled Marinite.  Given all of the interruptions I had all day and night, I can't imagine what it would be like if those interruptions were doubled because of a roommate.

The routine and pace of activities each day were the same as those that Tom experienced during his hospitalizations.  I knew what to expect.  The only difference was that he wasn't there with me.  One of the things he taught me by example was how to be gracious while a patient.  I certainly wasn't gracious when he was the patient.  I was a mama bear, fiercely looking out for and protecting my injured mate.  I didn't intend to be a bitch on wheels, but the most important thing was Tom and his care.  My job was to advocate for him so he could focus on healing.  During my hospital stay, I had to be my own advocate.  I had friends that would do that for me if I was unable to do it for myself, but was able to be clear about my needs.  And the care I received was excellent.

When Tom was discharged after his first extended hospitalization, he was weak and needed to build his strength.  Every evening, around 7 pm, we would take the dog and go on a little stroll.  At first it was to the mail box and back.  We extended the distance a little at a time.  When I was discharged, I also needed to rebuild my strength and give my heart a gentle workout.  So in the evening, around 7 pm.  I would take the dog and slowly make the same journey. My friend, who was caring for me, walked with us.  At first it took all I had to walk 150 feet to the mailbox.  It felt surreal.  It took me back to those evening of walking with Tom as he recuperated.  The sunlight was the same, the temperature was the same, the smell and feel of the breeze was the same.  It has now become a nightly ritual, two months later, that I take Zora on a walk.  At 7 pm she sits in front of me and stares.  And every single night I remember those strolls with Tom.  It is one of the parallels.

During Tom's illness he developed orthostatic hypotension--feeling lightheaded and dizzy when he stood up.  He was a big strong fellow and he didn't feel strong during those episodes.  It was one of the reasons I would walk with him and stay close when he was up.  This week I developed a similar problem.  It is a part of the recovery process as the medications I must take for another month have greater side effects at their current dosage.  It has happened twice this week, the lightheaded and dizzy feelings when I get up.  It can be scary.  But I look at it as progress, as my body healing.  My doctor has prescribed more salt in my diet and a lot of fluid.  It is another parallel.

This last day of June is not a day I care for.  I am a person who focuses on dates, and experiences.  Even when I don't want to, it is how I am wired.  As I experience these parallels, I begin to wonder if it is time for me to consider moving.  Our home has been a refuge, a place of comfort.  It is the place where we lived our lives, the happy times, the bad times, the ups and downs, the place of laughter and love.  It is the place where Tom died.  It has been a place of security, of grief, of pain, of memories and of renewal.  And while it is still deeply held in my heart, I am beginning to feel that it may be possible for me to let it go, or at least move from it.  Perhaps it is time to leave the nest and move into my future.  I am now in another place of transition.  It seems never-ending, the different stages of transition.  I'm in a different waiting room.  It has been a long journey, which started four years ago today.  I do not know what comes next, but I am willing to be open to the possibilities.  As my heart heals not only from the surgery, but from the loss of the love of my life, I search for the next right step in my life.