Healing

Rehab

I was not a fan, but it was not a choice.  With my trusty iPad, I researched Spaulding and discovered they are one of the best in the world.  Tedy Bruschi went there!  Tedy Bruschi had a stroke and then went back to playing in the NFL??  I was inspired.  The team at Spaulding was phenomenal.  However, it is the closest I ever hope to come, being in prison.  I can’t use the rest room alone.  They alarm my bed.  They pump my stomach full of “whatever” based on some archaic formula for determining how many calories I need to take in.  I am put in a chair naked and hosed down like an animal, in lieu of a shower.   That is my perspective.  I am sure it was in my medical best interest. 

When I arrive, I can only walk 45 feet with a walker.  My risk for falling is great.  However, I live alone.  I am fiercely independent.  Without having laid eyes on me, extended family tells me I should never live alone again.  Days of therapy are brutal, yet I have friends asking if I spend my days watching “TV.”  Whatever devastation had befallen my body, my mind and soul were not crushed.   One morning as I am wheeled into the elevator, another patient joins us.  “How are you?” he says meekly.  I retort “I don’t know about you, but I have been better.”  We all laugh. 

I get my first scope up nose and down my throat to view my vocal cords.  I actually had to beg, along with my therapist, to have it.  I was desperate to swallow again.  You can tell by my squeaky voice that something is not right, and they confirm that one vocal cord is paralyzed.   Christina was my speech therapist in rehab.  She believed in me when I didn’t believe in myself.  I can’t describe the horror of not being able to swallow.  As a “foodie” I was afraid I would never be able to indulge again.  But pragmatically, I could not swallow my own saliva.  Kleenex were my constant companion.  One day I came back from OT to find a beautiful tapestry with elephants (one of my favorite animals) across my bed.  Christina had snuck it in when I was at OT.  To this day, when I look at that tapestry, I feel hopeful.   It was one of many kindnesses I cherished throughout my journey….

Kindness

I cannot express my gratitude for the number of acts of kindness shown to me throughout my darkest days.  Several friends offered to fly to my bedside.  But I was embarrassed.  I did not want anyone to see me so broken.  A few did not listen.  My friend and mentor Jackie did not ask, she just flew across the country to spend the weekend with me in rehab.  She was my rock, she even went to therapy with me and let me win at Jenga.  My manager, Cynthia came with food for my nurses and with one comment about a “cute staffer” gave me hope I could become normal again.  Meredith came with books, Hydee came to help me plan a strategy for home.  My friend Caela sent me a silver cuff, anonymously, with the inscription “We are cheering for you” on the inside.  Many sent cards and flowers and notes of inspiration.  I saved every one of them and later bought a leather envelope and took them with me, everywhere I went, my first year.  Whenever I was low, they reminded me of how lucky I am.

“Just a little note to say how much we love you…you are always such an inspiration to me, even now.  Nothing stops you.  I love you dearly.”  Jeff (and Eric)

“Hey Lynne, You’ve heard this story before, but it best depicts LP’s life.  We were playing football in the backyard at Wildwood road.  You were the center and I the defensive nose tackle.  On the first play I knocked you on your ass.  You didn’t retaliate, but got up and said  “That will not happen again.”  It didn’t.  You are the best!!  Love Farley” Background this is my step dad, the only parent I have ever known, describing a back yard football game, when my brothers and I were in high school. 

I have so many.  I am so blessed.  I now keep them at home, too valuable to carry around.   I look at them often.  There were many ups and downs in rehab.  Unlike ICU, friends and family could visit in rehab, but I was only allowed to be in bed or a wheelchair.  I was mortified.  But support kept me going.  I felt hopeful.  And loved. 

My best friend Christy and Mike came to visit.  She was still upset that I did not call her right away….but she was running her first Ultra marathon and I did not want to impact such an important goal she had worked so hard for.  I felt perhaps she could use a little “mental rehab” for attempting such a feat.  She was encouraging and to this day assures me I can overcome anything .

My Cisco family constantly checked in; Ish friend and Cisco exec, reached out and offered the expertise of his younger brother.  Dr. J was inspiring and sent some emails to people he knew at Mass General.

Even my nurse Cali walked her pup to the hospital to see me.  So much kindness.  But it was in rehab I got the terrible news that my “nephew dog” Jack had passed.  I wheeled myself out to look over the Charles river and cried my eyes out.  It was then, I first learned that I could only cry out of my right eye.

Homecoming

I would have left sooner, if I had clothes, some money and felt I could move fast enough to out pace the nurses.  But finally homecoming day arrived and my brother came to spring me out. The proprioception was horrible in the car and I was mortified to use a walker to pick up my meds at CVS.  As we pulled into my driveway, I saw that  the very large sign “Welcome Home” had blown off the garage.  I was impressed.  I have that sign today and I framed the “welcome home” balloon. 

I made it up the first flight of stairs.  I felt like I had scaled Everest.   I leaned against the counter for support as my brother went down to get my bags.  By the time he came back, I was like the leaning tower of Pisa.   Completely unflappable, he grabbed my arm and led me to my favorite chair in the living room.  “Time for a rest.” His only commentary.

That night I enjoyed a hot shower with no one watching and slept in my own bed.  Delicious!  The next morning my brother went home and I was cleared for home care.  I had a nurse visiting every day, speech therapy and OT twice a week.     

How do you know who you are?

What do you do when you fall? They say fall forward, but when it becomes a physical fall, things are different. I have always been a grinder, it has helped, but sometimes it hurt.  I was humiliated that I went from doing cross fit, to laps around my yard. But God blessed me with more determination than ego and I wore a path around the perimeter in my yard. First it was five laps three times a day then I worked my way up to 10. But darkness falls early in NH, in November and I was on my 9th lap on a cold dark night.  As I was going up an incline in my front yard, I slipped and fell. I was stunned, the taste of blood and mud mixing in my mouth, I fought the urge to panic. I was alone, my body could not recover, I had absolutely no idea which way was up.

You don’t know who you really are until you are face down in the mud on a cold night and you don’t have enough energy or enough balance to get up. I try to breathe, but the mud chokes me and then I see it....my front porch light. I belly crawl to my front door and cutting my hands and knees on the bricks and cement stairs. I have mud from head to toe and somehow, I make it up to the second floor and climb into the tub. Shivering and scared, my eyes close. I sleep until I can gather enough energy to clean myself up. I was inside. I was safe. And I was determined to get better.

Goals

In early December, I see Dr. Leslie-Mazwi and I learn the term pseudo-aneurysm and it is clear my little jaunts around the house are not what is best for me.  I am so confused.  What is best?

“You know what I need,” I say to him.  “Goals.  In April there is a Comeback Walk for stroke victims.  5K.  In June, during my birthday, there is the Avon 39 walk for breast cancer.  I want to do them.”  “OK” he says.  I ask about my swallowing and comment that I am craving a cheeseburger.  I don’t share that I am mentally torturing myself by watching the cooking shows I used to enjoy and had recently enjoyed, quite tearfully, “The Best Thing I Ever Ate” cheeseburger episode.  He politely suggests quinoa over beef.  I love quinoa, but who craves it??

I learn every year 795,000 people in the US have a stroke. 1 in 4 are a repeat stroke.  10% of stroke victims will recover almost 100%.  25% will have minor on-going disabilities.

40% will have minor to major on-going disabilities with some needing special care.  10% will need to be in a long-term care facility.  15% will die.  I am determined to be in the 10%.  At the same time, I am mindful I have a higher likelihood of dying. 

Art and Science

It took me a long time to learn that medicine is as much of an art as a science.  There are multiple opinions and procedures.  I quickly learned the importance of hope.    

A rehab doctor at Spaulding, told me I would never go back to work.  When you have a brain injury, you don’t discount any information you are given.  When I inquired as to why she thought that…she replied: “Well, you have a feeding tube.  And you travel for your job.  How will you travel with all your cans?”  Then I got mad.  Every day, I wake up.  Figure out what needs to be done and then figure out how to do it.  She didn’t know me, yet she was so ready to rob me of my hope.  I am sure I will find a way.   

I did not schedule a follow up.  As we were heading to the parking garage we passed some ambulances coming in, “that is the only way I will be coming back here” I quipped.  Then silently prayed I was not foreshadowing anything.

Holidays

Every day was an adventure.  I would wake up, figure out which parts of my body were working and plan my day accordingly.  I was remarkably fatigued.  Friends kept my spirits up by visiting.  I still could not swallow by Thanksgiving, so I took a bye.  I did insist we celebrate my brother’s birthday with a limo trip into Boston for shopping and dinner.  It was a mistake.  The pain on his face was enormous.  There is nothing worse than hurting the ones you love and being powerless to fix it.  Yet I remained determined.  We were in the Prudential Building shopping.  I was approaching the escalator and looked around for my brother to help steady me for the long, crowded, trip down.  My young nephew immediately grabbed my hand; “I’ve got you Auntie.”  He had no idea how much he really did.

I have seven nieces and nephews and a lot of Christmas shopping.  Thank goodness for online shopping and delivery.  I paced my wrapping and brought each gift upstairs to wrap, mainly because the roll of wrapping paper (left from last year) was too big to get downstairs.   I had asked my brother to bring the gifts to my family.

My friend Stacey, asked if she and her husband could drop by Christmas Eve.  Sure!  My only plan was wrapping.  I was upstairs, doing just that, when I hear a car door slam.  I hoisted myself up, as it took some time for me to get to the door.  Then I heard another door slam…then another…I made it to my back porch…it was pouring rain.  I was stunned to see many of my former gym mates all assembled, with their children and printed carols all singing their hearts out.  I could not have imagined a better gift.  Stacy had coordinated it.  I was so touched that so many would take the time, on Christmas Eve, to come.

Christmas

After all the excitement, I attempted to navigate the feeding tube.  In a cruel turn of events, it gets stuck and I end up with the feeding “muck” from head to toe.  After an extensive clean up, I head to bed, with my iPod and some more Christmas carols.  The next morning, I awake and once again enjoy “breakfast” via the feeding tube.  No matter how hard I push I am unable to get anything in the tube.  Family calls and I try to stifle the panic and assure them I am fine and I really do want to be alone, even on Christmas.  I spend the morning googling how to unclog a feeding tube and texting with my friends, begging them not to stop by….I am really fine.  I google “how long can a person live without food and water.  Three days to three weeks.  That is helpful.  I call my GP the day after Christmas.  “Sorry” she says, I have not had a patient with a feeding tube.  I told you that.”  Back to doctor google. 

Two days after Christmas, my brother arrives to take me to Boston for a “swallow test.”  When you can’t swallow, they make you have a test to see if your throat muscles are really working, to clear you for solid food.  It was strange though.  I had elected to do my follow ups in NH, because I did not have a way in and out of Boston easily.  But when Mass General called, I booked it.  That is when I met one of the heroes of my story:  Theresa.  She is AMAZING.  In the test, you “try to swallow” this liquid as they watch on some type of x-ray device.  Given I had not gotten anything in the tube for three days I could not have been more motivated to get something down.  But it was clear, I was not swallowing.   Theresa it seems, saw promise in me.  She was going on a trip to South America at the end of January, but offers to work with me the first two weeks in January.  She makes some calls to cancel my home care and operation “swallow camp” is born.

Swallow Camp

I book a car service and a room at the Liberty hotel, right next to Mass General.  As it turns out, the speech therapist, Amy, I had in ICU had seen my Epic record come up and that I still wasn’t swallowing when I left Spaulding.  She was responsible for connecting me with Theresa.  Theresa was truly amazing.  You are born with the ability to swallow.  How do you teach it? Everyday, I would come to her office and attempt to swallow different things with different textures, turning my head to the left to the right.  Inevitably it would come out my nose.  She was unfazed and patient.  I now understand what Brene Brown means about vulnerability. I explained the feeding tube issue and Theresa got me into Mass General immediately. 

This is when I learned about medical “protocols.”  Because I had a stroke I had a long tube put into my stomach, out my belly and secured with a hard ball inside my stomach.  Once the doctor determined the tube was clogged, we could remove the PEG tube and insert a Mic-Key.  A month before, my career coach had asked how I could comfort myself.  I honestly could not answer.  Everything I used to comfort myself before (work out, hot tea, warm bath) had been stripped away.  With the Mic-Key, a hot bath could be coming my way.   I am from the technology sector.  When we have better technology, we use better technology.  I had been dragging around a “tube” when I could have had a little “button.”   “Protocol?”

I knew removing the first tube would be painful.   It was.  But then as they attempted to insert the Mic-Key, I heard those five words from the doctor, no one wants to hear: “I can’t get it in.”  Things move really fast from that point.  They are shocked that I am here alone and staying at the hotel next door.  The next thing I know I am strapped to a maneuverable table in a radiology room.  Now they can see my stomach, the former “hole” where the PEG tube was placed.  “You’re going to feel some pressure” the doctor says.  “Bring it” I say.  “You understand,” he continues, “when I say some pressure, this may hurt.”  “All good” I reply.  What do you say when you are strapped vertically to a table with a group of doctors looking on??  “1,2,”  I don’t know if he said “3” but he went on 2 and it was quite clear to me that we were ”in.”   They let me down, unstrapped me and I hobbled back to my hotel room to enjoy my first sustenance in almost a week.

I am Coming Back

The next day Theresa was waiting in her office and I felt much better.  We did some visualization and tried some more foods.  By the weekend I could swallow some thick Odwalla drinks.  I stocked up for the weekend, went home, practiced and kept a log. 

I had always used the motivational videos on YouTube to inspire me (Motiversity, Mulligan Brothers, Be Inspired) but after the stroke I became obsessed.  I kept my favorite quotes on 3X5 cards and would read them before my appointments and before going to bed. 

“The body has limitations—the mind does not.”

“If you are not mentally ready-you are never physically prepared.”

“Whatever opens us is not as important as what it opens.”

“To be broken is no reason to see all things as broken.”

“Put your ass where your heart wants to be.”

“This is the year of growth, of discipline, of focus, of restoration, of action.”

“One person who believes in the dream can overcome an army of doubters.”

“Stay strong.  Be different. Your destiny is in your hands.”

“Wake up and pursue.”

“Get there and start working.”

“What will ignite your courage to get up and come back, again and again.”

“If I fail and I don’t try again, will I ever achieve?”

“Life is difficult-but it is worth it.”

I have boxes of cards.  I surrounded myself with hope and determination.  I usually spent the morning with Theresa and the afternoons walking the cobblestone sidewalks of Boston trying to work on my balance.  One afternoon, I walked to our Boston office to meet with my manager.  Spitting into tissues, with my manager (who is wary of germs) I stated my intention to come back to work.  She looked me straight in the eye, got up and moved the trash bin next to me and agreed, I could come back.  No travel.  I protested.  My doctor said I could fly when I passed my second scan.  She informed me that she did not give me permission.  Grateful for her kindness, I kept my mouth shut.  We agreed on a date.

I walked back to the hotel.  I was elated.  But I did not want to go back to work spitting into a Kleenex.  This is not how I intended to “show up.”  The whole way back to the hotel I envisioned myself swallowing.  I will swallow.  I will swallow.  One block, two blocks.  No Kleenex.  Block 3.  Kleenex.  But I was on to something.  I stopped at Whole Foods on the way back to the hotel.  I stayed up all night, visualizing and trying different textures. (Note:  I had no permission to “try” swallowing alone.  I had been explicitly warned not to try alone.  I don’t recommend or condone it.)

The next morning when I walked into Theresa’s office I smiled and greeted her as usual.  I had my “bag of snacks.”  “What do we want to try first?”  “Hmmmmm, how about the Quinoa Kale chips?”  “Unusual breakfast choice” she replies as I pull out the bag and position the cup.  I smile, unable to contain my excitement and pop in the chip, chew and swallow.  They are the puff like chips, not a lot of volume.  Theresa pauses waiting for me to spit it out.  I pop a second one in.  “You are swallowing” she exclaims, “I can see it!”   I think it was on the fourth one, I start to cry. Dr. Leslie-Mazwi was onto something with the quinoa.  When I look in Theresa’s  eyes and see the surprise.  I realize she was not as confident as I had thought her to be, these two weeks.  She made me believe.  What a gift.

Blizzard

A few weeks later I am back at work.  We have a meeting in Boston (which I am completely convinced my Cisco family had in Boston, so I would not have to fly.)  I book my feeding tube removal on Friday, at the end of the meetings.  I have to be the same weight for three weeks to have it removed and I have rolls of quarters attached in the hem of my boot cut jeans to ensure success.  The hospital calls me to ensure I can still make it into the city, given we are having a blizzard.  I assure her I will be there and begin the peaceful, but slippery, walk across the city to achieve the next milestone in my healing.

At the meeting, my voice cracks and sometimes I am hard to hear.  The vocal cord is still frozen.  I make some calls and schedule a procedure to have gel injected into my vocal cord to create a better “surface” for my good vocal cord to reverberate off of.  I don’t really investigate the procedure, I am focused on the result.  My mistake.  They send the scope up my nose and into my throat. This is my 6th time I have had this procedure, so I am used to this now. “But does this mean you will stick a needle in my throat?” I inquire, at a time much too late to change the outcome.  “No,” the doctor replies.  Before I can feel the wave of relief, he continues: “It means you will have 3 needles in your throat…and”  (Wait for it.)“You will feel like you can’t swallow and you may feel like you can’t breathe, but you really can.”  What kind of mad doctor dreamed up this little procedure??  I wonder.  I have a local anesthetic so I can watch the procedure, but not feel it.   As I am leaving, he explains that I should not talk for two weeks.  I am spitting up blood, as I rush out of the office before the doctor can give me any other ‘good’ news.