How Do You Measure a Year?

My world changed a year ago on January 13, 2016. That was the day one of my former Personal Assistants (PAs) did not follow my instructions, resulting in her dropping me to the floor during a transfer and fracturing my left femur.

I’ve written many posts about my progress this past year. I explained how it all happened in this post, then provided an update from the rehabilitation hospital in this post. I blogged about my transition home, and the challenges I faced as I struggled to prioritize my needs as I continued to heal.

There have been many gains this year. After months of therapy, I was able to successfully transfer into my driver seat in my van in April. Granted, performing that transfer requires such a high amount of my limited energy so I only drive when absolutely necessary. And I still can’t independently transfer back into my wheelchair when I arrive at my destination, which means I must have someone meet me so I can get out of my van.

That’s not entirely accurate. I CAN transfer out of my driver seat if I am parked on an uphill incline. Gravity still works, and when parked uphill, it gives me a boost when I slide back to my wheelchair. However, if I’m parked on an uphill incline, I can’t get back into my driver seat so I can drive back home. Stupid gravity – who said it was a good thing?!

I am still pursuing a new vehicle which will be modified with a high tech driving system. This will allow me to drive while seated in my wheelchair. The evaluation process is stalled for the moment, thanks to matters that deserve and will get their own blog post. But, eventually I will be fully independent for driving again and it WILL happen in 2017.

Five hundred twenty-five thousand six hundred minutes. Anyone who is a fan of the musical Rent, written by Jonathan Larson, knows a year contains 525,600 minutes. But as the opening song in the show tells us, time is just one way to measure a year.

I can measure the past year in the number of hospital admissions (2), the number of new internal permanent screws in my leg (8), the number of new PAs I’ve hired (4), the number of months absent from work (4) and the number of address changes (1). I can also measure the number of new great nieces and nephews born (2), the number of visits with my best friend (5), the number of blog posts (72) or the number of funerals (thankfully, only 1).

But when I think about this past year, the one word that keeps repeating itself in my head is the one thing Jonathan Larson encourages us to measure most – love. This year, I have been blessed to be the recipient of so much love from friends, family, and readers. When I first started writing about my fracture and rehab, I received cards and letters from around the world. I had at least five visitors every day for the month I was hospitalized. People called, sent Facebook messages and Skyped when I was unable to leave my house.

Although I need assistance every day in order to survive, I am bad at asking for it. I would rather do just about anything else than ask someone to help me when a PA has called in sick or has quit. However, this year I had to repeatedly ask the people in my support network for their assistance and you know what happened? Almost 100% of the time they said yes! Whenever I asked for help, I received it. If that isn’t love, I don’t know what is.

So while 2016 was full of more challenges than I’ve had to face in quite some time, it was also full of love. I’d rather measure the love.

I searched for a good video of this song and was overwhelmed at how many hits came up. Then, I stumbled on this one with ASL interpretation and knew this would be the one to share.

The words "30 days of thanks" in cursive writing on a green square.

A Week After 30 Days

It has been just over a week since my last 30 Days of Thanks post. As I do after each blogging challenge, I have been reflecting on this experience and trying to gather my thoughts into something worth posting. Although this is my third time completing this challenge, there are still lessons I am learning along the way.

1. Guests are Great!

This was the first year I asked others to consider taking part in my 30 Days of Thanks. I’ll be honest and admit I did this for selfish reasons. Guest posts meant less content I had to create myself. I am taking a memoir writing course this year, and the daily writing required for the course takes up time I would have otherwise used for my blog posts.

Thankfully, several of my friends took me up on my invitation to write, granting me the privilege of sharing their amazing work to my loyal readers. Reading their work also caused me to stop and think about their writing, how they crafted their messages, what devices they used effectively and how I might try to incorporate these in my future writing. I am grateful for their generosity, but embarrassed to admit…

2. I Left Out a Post.

Early in my blogging life, I connected with a delightful writer, Lily. This year, Lily branched out and started writing about daily random acts of kindness on a new blog. I asked her if she would be willing to write a piece for my 30 Days of Thanks. Lily wrote a very insightful piece, thanking a man who broke her heart. I was honored she offered it to me and scheduled it (I thought) to appear in late November. Then, two days before it was to post, I realized it was not in my list of posts. What’s more, I couldn’t find the email and file containing the post. I panicked. I searched late one night then went to bed, promising to do it first thing in the morning. Only, I didn’t do it because work, Personal Assistant illness, life – you pick it. I forgot. I forgot to fix my mistake, and I never ran Lily’s post. I have apologized to Lily, and I hope she will forgive me and let me make it up to her. Now I’m owning up to all of you, because I feel like I’ve let Lily down and I dislike being the cause of anyone’s disappointment.

3. “Not All Rock Stars Play Guitar.”

Prior to last month, I averaged 50 blog visitors per post. The largest number of visitors to DeeScribes in one day occurred in September 2015 when I wrote the post, I Never Said He Wasn’t Being Kind. Two hundred seventy six visitors read that post, a record which held until November 22 when I wrote this post about my friend Mike. Within two hours of posting, I had 50 visitors. The post was shared by multiple people and then Mike shared it. After eight hours, it had been seen by over 200 people. I knew before I went to bed that night it had broken my prior “daily record” and was approaching 290.

I can never predict what will resonate with readers, and what will appeal to a large number of people. I am convinced if you put a photo of an attractive man in uniform with your post, your blog stats will improve for the day. I told Mike I planned to use his photo with a random post just to test my theory sometime. He’s the one who gave me the quote at the start of this section, as well as the story for an amazing day on my blog. Thanks again Mike. You and the other officers are definitely getting cookies this year.

4. People Like to be Surprised with a Thank You Note.

Before I write and share my 30 Days of Thanks posts, I always ask the subjects of my posts if they will permit me to share my thank you note to them on my blog. Only one person has ever refused, and of course I honored her wishes. This year, for the first time, I wrote posts about each of my sisters without telling them in advance I planned to feature them individually. Once the first post about Sandy went live, Donna, Susan and Caroline knew their own posts would be coming. But, I did not share my posts with them in advance. They all responded to the memories I shared, and sent me delightful notes or comments in return. I’m glad I took the time to write separate posts for all of them as gifts for all they do for me.

Thank you to everyone who supported me and my guest bloggers through my 30 Days of Thanks challenge. I am grateful for your comments and shares. I hope you will continue to practice daily gratitude for the people and blessings in your life. And if you have time, send someone a thank you note. It will make their day.

30 Days of Thanks Day 30 – The Pool Gang

I have never been a fan of exercise. This is partly because it is difficult for me to physically move my body, and exercise requires movement to be effective. It is also partly because I have never experienced the endorphin rush that is described by others who enjoy exercise. I don’t feel good when I exercise. I just feel fatigued and tired.

The only form of exercise I can do is aquatic therapy in a therapeutic pool. There are three accessible therapeutic pools in my area, and each one is at least a half hour drive from where I live. So, getting to the pool is a four hour commitment – 40 minutes to drive there, time to get undressed and transfer to a pool chair to go in, an hour in the pool, an hour to shower and get dressed, and 40 minutes to get back home. Add the fact that I need another person to accompany me for any of this to happen, and I don’t get to the pool that often.

Or rather, I didn’t get to the pool that often before May. But now that I am still trying to get stronger and recover from my femur fracture? I have become a regular at the Sunnyview Hospital therapeutic pool on Mondays and Wednesdays for the 7 AM open swim.

Today I give thanks for the other regulars at the pool. Jose, Chip, Dominick, Alberto, Susan, Tom, Sister Joan, Sue, The Doctor and his wife (I still don’t know their names after 6 months), Will, Debbie, and the others who sometimes cycle through welcomed me and my Personal Assistant Tina with open arms. They offer support and encouragement to everyone in the pool. When someone is absent, they worry. If someone has good news, they celebrate.

I still haven’t turned into a person who loves to exercise. But I look forward to spending time with my morning friends in the pool. The comraderie between us is positive and uplifting. As Tina put it when I read her a draft of this post driving to the pool this morning, it’s like we’re one big family.

Recovering from an illness or injury is difficult and requires determination and stamina. Having a peer support group keeps me focused. I know they will question me if I start to slack off. Last week when I walked for the first time while submerged in the pool they gave me kudos.

Thank you to my morning friends who greet me each Monday and Wednesday. I appreciate you welcoming me into the fold. There’s no better way to start the day.

30 Days of Thanks Day 28 – Guest Post by Via Mari

My final guest for this month is Via Mari. We “met” through an online writing group and learned we shared a love of travel. I enjoy learning about Via’s research process, and the importance of keen observation when it comes to getting the details right when describing a location in writing. I am excited to share her gratitude post as we near the end of 30 Days of Thanks. You can read more of her work, including descriptions of her books and insights as to how she researches her writing, over at her blog.

Thankful for Memories

When I think of thankfulness so many things come to mind, but as I ponder what I am really thankful for this year it has to be my memories.

As a young girl, I recall waking up in England and following the scent of mom’s baked goods down the stairs to the kitchen below. The large walnut crank- out table was the place we gathered to eat the sweet, flaky pastries and drink the robust black tea which mom always cooled slightly for me with a little milk and sugar.

As a teenager, I recall shopping with mom for special occasion dresses. It’s the laughter and the fact that I could tell her anything that I remember so vividly. We would spend hours talking through all life’s little troubles as we went from boutique to boutique. Together we would search until we found the perfect dresses. The little frilly red and white ones for holidays and pictures with family, a long pale yellow formal for my first dance, and a flowing midnight blue sparkly strapless for prom and another short, more sophisticated black strappy dress with sequins for the young woman who was about to graduate. Then it was the wedding dress, the ultimate pursuit. Bridal shows, boutique after boutique, day after day of laughter and talking until we found the simple, classic white dress I would be married in.

As a young woman, I recall my children enjoying the same holiday customs I experienced as a child. My mother’s traditions of baking Gramma’s homemade yeast rolls from scratch, the sausage and apple stuffing which would be lovingly prepared to accompany the turkey, and engaging them in the laughter and conversation that was always so much a part of the day.

As a woman today, I sit quietly watching my mom interact with our extended family. I am thankful for all the memories we are making and that I will have the ability to look back and remember every extraordinary thing about my mom today.

30 Days of Thanks Day 27 – Christy and Mike

Twenty six years ago, my high school friend Vicki moved to the city I now call home for a new job. I met her roommate, Christy, when Vicki, Stephanie and I helped plan our friend Allison’s bridal shower. We held the shower in the community room of my apartment complex. A few months later, I saw Christy and Vicki again at Allison’s wedding where we danced and laughed all afternoon.

Two years ago, I saw someone who looked like Christy walking across the parking lot in front of my apartment. I thought about the fun times we had the summer of Allison’s wedding, and told myself I should do a better job of keeping in touch with long lost friends. I didn’t think about it again until I got a Facebook message from Christy a few days later.

Hey – do you still live in Strawberry Ridge? I think we’re neighbors!

Sure enough, Christy and her husband Mike had moved into an apartment in the building across the parking lot from my old apartment. Since I’m always looking for new people to add to my local support network, I was excited to have another friend close by.

Christy and Mike were great neighbors. They helped clean my car off when it snowed if nobody else had gotten to it. A few mornings when I was stuck without a Personal Assistant, Christy came over to help me get out of bed. The three of us spent a lively day at Saratoga Race Course a delightful young-at-heart friend of theirs. They kept a spare set of my car keys in case of an emergency while I was in Australia.

When I fell in January, I sent a message to Christy asking her to keep an eye on things while I was in the hospital. Christy and Mike came to visit me, bringing cheer and positive energy on a night when I was not happy with the prospect of an extended stay in rehabilitation.

Whatever you need when you get home, just let us know.

This past summer, Christy and Mike volunteered to help me move. They spent a Saturday packing box after box, taping and labeling at top speed. Seriously, those two are pros and had my living room and kitchen packed in no time!

Living down in town means I have more freedom to take part in town activities. In September, I was able to walk down to the harbor to meet Christy and Mike for the annual Tug Boat Round-Up. We walked along the canal, snapping photos of the tugs, talking while Mike (a former Navy sailor) toured the boats.

Thank you Christy and Mike for being great neighbors and loyal friends. I appreciate your willingness to help me and I’m grateful you were willing to join my circle of support. We’ll have to plan something fun together this winter, and I promise it won’t involve packing tape!

30 Days of Thanks Day 25 – Stephanie

I wrote about my bestest best friend, Stephanie, in 2014 when I first did the 30 Days of Thanks challenge on my blog. As I have explained for most of my life, Stephanie is the sister I got to pick for myself. She is what the author Lucy Maud Montgomery described in Anne of Green Gables as a bosom friend, “a kindred spirit to whom I can confide my innermost soul.”

When I fell in January, I made two phone calls while waiting for the ambulance. I called my sister Caroline, and then I called Stephanie. I always call Stephanie whenever I am at the end of my rope. And she always answers.

Stephanie lives three hours away, and does not like to drive in snow. I did not expect her to come visit me in the hospital because a trip to see me in January or February would most likely involve snow. So, when she walked through my door on the first Sunday I was at Sunnyview Rehabiltation Hospital, I almost started to cry.

Hello there Niecie!

Stephanie is one of five people who can get away with calling me that, a nickname her mom used to use. Stephanie, along with her husband, youngest son Brad, and mother-in-law, made me laugh, offered repeated hugs, and brightened an otherwise dreary afternoon.

I had to come. I just needed to make sure you were really OK.

Stephanie and Brad came up to visit again in August, the weekend before I moved. She knew I was stressed about finishing my packing, and cleaning out my “junk room.”

We’ll see what the weather is like. If it’s raining we can do work inside. But if it’s nice we should probably go have some fun.

I can always count on Steph for fun. Sure enough, she and Brad arrived and within two hours, we had a lunch packed and were on our way up to Saratoga Race Course. We spent the day watching horses and people, laughing over silly things, trying to capture the perfect photo. Our day was the perfect break from reality, a much needed oasis of frivolity in the midst of anxiety.

Stephanie – thank you for always “getting me.” I cannot imagine a world without your presence as my bosom friend, a true kindred spirit. Throughout this year you have listened, cajoled, encouraged, and laughed with me. You have seen and listened to me at my absolute worst, and you still love me anyway. I don’t know how I managed to get so lucky as to claim you as my partner in cute. Everyone needs a Stephie in their life, but I’m not sharing mine.

I’m grateful for the gift of your friendship all these years. Here’s to more fun adventures for another forty years!

Two Caucasian women leaning towards each other, holding adult size sippy cups with straws. Both women have brown hair and glasses.

30 Days of Thanks Day 23 – Alyssa

One of the best outcomes of my brief employment in an office at the New York State Department of Health was my introduction to Alyssa, my friend and massage therapist. Alyssa brought her massage chair to our building once a week and set up shop in an alcove near the cafe on my floor. I was quickly one of the regulars, reserving the 1 PM spot.

Over the next two years, we swapped stories and developed a friendship as she worked the knots and kinks out of my shoulders and neck. When she moved her workspace into an empty office large enough for a massage table, I lamented that I wished I could get on it for a full body massage.

You know, I don’t mind doing a home visit. Would that be an option?

Wait – she was willing to bring her wonderful hands to my house?! Of course I said yes!

So began our monthly visits. Since I have a fully electric hospital bed, Alyssa does not need to bring her massage table. With the help of my red satin sheet used as a pull sheet, Alyssa is able to move my body into positions which are comfortable for both of us.

I was scheduled to have a massage on the week after I broke my leg. I contacted Alyssa from the hospital to cancel our plans.

I’m going to keep it on my calendar. I’ll plan to come visit you at the hospital.

Alyssa arrived that Sunday to find me whimpering in discomfort. The swelling in my lower leg and foot, below the fracture, was the worst I’ve ever experienced. My leg felt like a sausage under pressure, my skin shiny like a casing ready to pop.

Would you like me to just massage it gently? I see you have some lotion here.

The next hour was bliss. Alyssa dimmed the harsh overhead light, used her iPhone to provide relaxing music and slowly started to rub my leg. Gradually, the fluid started to work it’s way up my leg and I felt the pressure decrease. The pain and tightness disappeared as she worked her magic hands over my skin. When Alyssa was done, I asked her to grab my purse from the drawer next to my bed so I could pay her for the massage.

I’m not going to let you pay me Denise. I didn’t come to massage a client. I came to visit a friend.

Alyssa has become a very treasured friend. She listens without judgement, providing encouragement and support. She frequently shares my writing with others and always takes time to comment on posts she has heard me talking about writing or researching. When I had to learn new ways to move my body after the fracture, Alyssa was willing to adapt our sessions. Throughout this year, she has helped with stretching and massage, providing some of the few fleeting pain free moments I have had since fracturing my leg in January.

Sometimes when people have to provide my physical assistance for the first time, they are nervous about hurting me or doing the wrong thing. Alyssa did not have experience with personal care before she started coming to work at my house. But, she listened to my instructions and very quickly became adept at moving me and working within my limitations to give me the most benefit.

Alyssa knew I was planning to move out of my former apartment this year. She witnessed the stack of boxes growing as I packed my life in June and July. Then, she surprised me with a text.

I’ve blocked out the morning you are moving. Plan on me being there to help, and I’ll try to bring my boyfriend.

Alyssa and Josh lifted and carried many of those boxes in August. Even when her family plans changed, Alyssa honored her commitment to provide help during a stressful time in my life. Because that is what Alyssa always does. She provides relief when I am stressed and anxious.

Thank you Alyssa, for being a true friend through good times and bad. Yes, I love your massage skills and talents. But they pale in comparison to your kindness and compassion. I am grateful to all you do to make my world less stressful and less painful. I function better because you are there whenever I call.

Two open hands.
Alyssa’s hands after a massage.

30 Days of Thanks Day 22 – Mike

There have been many stories in the media this past year about people with disabilities experiencing disrespect and maltreatment from law enforcement during times of crisis. I’m fortunate to have a different story to tell.

Those of you new to my blog may not remember that I started 2016 with the discovery of a theft. I returned home from vacation on January 3rd and learned over $1000 was missing from my checking account because a blank checkbook was stolen. Officer Mike Dilbone responded to my call when I reported the theft. I ranted about the inconvenience of returning from vacation to discover a crime. I spouted off for several minutes before apologizing for swearing.

You think that’s the worst I’m going to hear tonight? I just started my shift a couple hours ago and guarantee I’ll hear worse.

Officer Dilbone (we weren’t on a first name basis then) followed up with me throughout that week as he gathered evidence and subsequently made arrests in the case. During his visits, he asked about my home care staff and the steps I was taking to prevent future burglaries. I’m pretty sure he didn’t like all of my answers, but he was respectful and, unlike other law enforcement officers I’ve known, did not attempt to tell me what he felt I “ought” to do.

I figured that would be the end of my police contact for the year. But of course, the following week I fell and called 9-1-1 for an ambulance. My Personal Assistant answered the doorbell as I lay sobbing and writhing in pain on my bedroom floor. I heard the door close and the squeak of leather as the responding officer walked through my apartment.

Denise – what happened?!

A hundred thoughts went through my head, something like, “Crap. It’s Dilbone again. And this time I’m half naked. And I’m bleeding because I just got my period. And there’s snot running down my face into my hair. And this man has already seen me raging and crying once this year. He’s going to think I’m crazy and incompetent. He’s going to think I’m crying because I’m in pain. He doesn’t realize I’m crying because life as I know it is over. He’s just going to see a vulnerable person. This is a life-changing fall. I won’t be able to drive if my leg is broken. I can’t live at home if I can’t transfer in and out of my wheelchair without a mechanical lift. I know what this injury means, and I don’t have the strength to deal with it right now. And I can’t breathe because my nose is clogged. And I really need a tissue because now there is a bubble of snot coming out of my nose. And I don’t want to be this crazy woman who is always crying and raging whenever I call the police!”

I think I actually said something like, “What are you doing here? It’s not your regular shift.” The exact details are fuzzy because all I really cared about was stopping the agony.

After giving me an update on the ambulance, Mike helped cover me up and then crouched down next to me. He grabbed a tissue and gently helped wipe my face clean, holding my hair out of the way when I complained about the snot running down my face. He encouraged me to just keep breathing, while asking me to relate what had happened. I flashed back and forth between telling him about the fall, and directing my Personal Assistant who was trying to pack a bag for me to take to the hospital. I did my best not to be consumed by the fear of what this would mean for my future if my leg was indeed broken, but just before the rescue squad arrived a fresh round of tears and sobbing came on. I was tired, overwhelmed, embarrassed, and angry. 2016 was not off to a great start – a theft, a sinus infection, and unexpected wheelchair repairs. Now, on the 13th day of January I was half naked on my bedroom floor with snot in my hair and a potential broken leg.

“I can’t do this,” I wailed. “I’m not strong enough to do this.”

Mike calmly said something which stayed with me during the weeks to come.

Denise – yes you can. You’re a strong woman. You’re going to be OK. You can get through this.

Police officers often calmly tell distraught victims of accidents and crimes they will be alright. At least, the ones who have responded to me when I have called for assistance have done this. I usually discount these attempts to keep me calm, but on January 13th I clung to Mike’s words as the emergency medical technicians assessed my wounds and worked to get me onto a gurney and into the ambulance. I’m pretty sure I repeatedly told him I wasn’t strong enough.

But Mike, then a relative stranger who didn’t know much about me, was willing to issue a challenge. That is how I viewed those words – a challenge to make it through what was happening. It didn’t matter if I felt weak, terrified and vulnerable. Someone who saw me at my absolute worst, in a pile of blood, snot and tears on my bedroom floor, thought I was strong enough to get through my latest obstacle. I have never backed down from a challenge, and I was not going to prove him wrong.

Thank you Mike for being calm and rational when I was at my most vulnerable. You ensured the rescue workers listened to and honored my requests. You may not have known you were issuing me a challenge on that horrible January afternoon, but it was exactly what I needed. I appreciate your ongoing visits throughout my recovery, and your assistance as I moved into town this summer. I’m grateful for your friendship and support throughout this difficult year. Here’s hoping I have no reason to call you in a crisis in 2017!

A Caucasian woman with brown hair and glasses is seated in a red power wheelchair next to a Caucasian man wearing a police uniform.

30 Days of Thanks Day 21 – Guest Post by John McCosh

I met my guest blogger, John McCosh, and his wife Kristen at the Ms. Wheelchair American pageant almost ten years ago. Kristen was representing Massachusetts in the pageant and John was one of the amazing “Mr. Wheelchairs” as I called them that year. Our friendship developed over the next year during Kristen’s reign as the national titleholder. These days social media helps keep us connected. I am grateful John accepted my invitation to share a post for this year’s 30 Days of Thanks. After you read today’s post, you can follow John on Twitter: @johnmccosh.

The Perfect Wheelchair Trap

From our stateroom balcony, I watched the trail of crushed water our cruise ship left behind in a white boil. I was transported by the visual of the mesmerizing evidence of man made energy posted against nature’s historic depths trailed out atop an empty water horizon.

I thought about the liquefaction, the reinvention, the breaking, and the making of the earth; about Vesuvius and the changes the volcano would wreak; about Pompeii and Herculaneum. I thought about dusty Rome thanking the skies for rain.

Crossing the wine dark sea of the Mediterranean, I thought about how my home city, Boston, was more of a European city than I had, until recently, realized.

But I mostly thrummed with the emotion of having fallen into the perfect wheelchair trap.

My wife Kristen and I had spent the day in Marseille. The access coordinator on our cruise ship had said it couldn’t be done–there was no way for a wheelchair to get around, but, as we often do, we went anyway and made it happen.

We were dropped off by the shuttle bus at the mouth of the Old Port. The last bus back was leaving at 2:15 and all aboard the ship was 3:30. We walked down to the historic port and could see Notre-Dame de la Garde crowning the high elevation border of the city. We knew we wanted to make it there.

I wrestled up some old high school French lessons and found a hop on, hop off bus tour. We bought tickets and toured the city, passing the rock in the harbor that was the inspiration for the Count of Monte Cristo. We made it to Notre-Dame. I pushed and pulled the wheelchair along a rocky slope beside a long set of inaccessible stairs as we made our way to the foot of the church and looked out over the sweeping expanse of France’s second largest city and its largest Mediterranean port.

We were having a great day.

On schedule, we finished the tour and did some shopping back at the Old Port and made our way through the ancient part of the city. What we didn’t realize was that the Old Town made a steady climb, over a hundred feet above the sea.

I knew we were on track to get to our bus in plenty of time, but when we rounded the last corner, by the Eglise Saint-Laurent church we realized there was no way down. The ancient stone wall was a modern wheelchair barrier. There were long, winding sets of steps but no ramp or elevator.

But we still had time. We crossed the footbridge to the Museum of European and Mediterranean Civilisations, traveling right over our bus stop.

We had no idea the trap had been sprung. The French spoke enough English to understand we wanted to come in, but not enough to tell us you can’t exit to the street in a wheelchair.

Time was draining from the clock as we made our way through the building and the grounds. It was twenty minutes later when we realized we had to turn back!

We passed over the bridge again, back to the Eglise Sait-Laurent side—the side with out bus parked below. We considered backtracking through Old Town, but that was going to take too long. We zoomed down the road parallel with the bus route.

Kristen’s wheelchair was at full speed, me jogging beside. A quarter mile down the road we reached an elevator next to a huge set of stairs leading down to the lower elevation. It was broken.

A mild panic set in. We set off again, away from the bus, but parallel to the road to which we needed to descend. We checked a church for an access route as well as a set of stores, all the while making progress in the wrong direction, away from the bus. We finally made it to a thoroughfare, but there was still no path down in sight. We were stuck in a high place.

We were now more than a kilometer away from the bus. Even if we made it to the road we’d have to backtrack a considerable distance, and who knows what other barriers there might be.

We flagged down a woman who had just parked. We asked about transportation options, and she said it was difficult to get a taxi here, but she called anyway, our interpreter. The taxi said they were too far away but called another service.

We were forty-five minutes from all aboard. Our passports were on the ship along with most of our money and credit cards as we’d heard to be on the lookout for pickpockets and didn’t want to chance carrying them. Also, our two traveling companions were on-board with no cell service activated here. Our next stop was Barcelona, and I had no idea how we’d catch the ship if we missed it.

I spotted a taxi, my wife ducked out of site so the wheelchair wouldn’t scare him off. He stopped, and he spoke very little English but I was pretty sure he knew our ship. We broke the wheelchair down, taking out batteries, and collapsing the new wheelchair for the first time. We put it in the trunk and drove off.

We made the port, drove past the guards, and were virtually alone on the pier beside the ship with less that thirty minutes to spare.

On our balcony of the Norwegian Epic, I caught a reflection of my wife brushing out her long, blonde hair. We were on our way to dinner, and I knew I’d be thanking her for the adventure over dinner as we told our friends what had happened. And later, when we would walk the deck of that modern ship in an ancient world I’d think how much fun our life has been. I knew we’d talk about the trap we’d escaped and how thankful we both were to be on course together.

But for now I watched her traverse the low ramp out onto the deck, and I poured dark wine into crystal and proposed a toast to the sea.

A man in a baseball hat sits next to a blond woman wearing a black hat. They are in front of a fountain in Rome.
John and Kristen on their recent European vacation.

30 Days of Thanks Day 20 – My Personal Assistants

I regularly thank the Personal Assistants (PAs) I employ both in person and publicly. Without their efforts and dedication, I would not be able to live independently in the community. They are vital to my ability to function as the professional woman I try to be.

This year has been a rocky year for me when it comes to my PA team. I have faced employee theft, injuries, and illness in my staff. As all managers know, you are only as good as your team and it has been difficult for me to retain a quality team in 2016.

I employ fourteen women as PAs, with six of them filling the majority of my weekly home care shifts and the rest serving as per diem or back up staff. Yesterday I described Consumer Directed Personal Assistance and my role as employer in my self-directed home care program. Rather than a nursing agency scheduling and sending staff to my house, I am responsible for recruiting, training, scheduling and managing my staff. While this does offer more freedom and control, it also comes with great responsibility.

Please don’t misunderstand me – the women I employ are wonderful. They are kind, considerate, compassionate and respectful. Most of the fourteen women on my payroll have been working for me for more than three years. I am grateful to have them and recognize how limited my life would be without their service.

However, gaps in staff make it difficult to function. If my staff are unavailable and I cannot find a fill-in, I am not able to honor commitments to work, volunteer groups, or friends. I miss appointments or meetings if my PA calls out when she is supposed to drive me somewhere. When I can’t find paid staff to assist me, I must ask friends and family to help fulfill my basic needs, and unless you have had to call someone to help you pee or poop, you may not be able to understand how I truly detest having to make that call. Friends and family are kind and helpful, and do not make me feel guilty about having to call. I do that just fine on my own. That’s my issue, not theirs. Fodder for another post.

I have hired, and fired, more PAs since February than I have in the prior two years. I require more assistance now than before my femur fracture, and my established staff did not have the availability to take on my new shifts. I have used multiple online sources to advertise my employment opportunity, and have had good response. But a good response does not always yield good candidates. Since February, I have screened 48 applicants, conducted 23 phone interviews, and 8 in-person interviews. I have hired 4 people, and fired 3.

I am still looking for a PA to work some weekday and weekend shifts, if anyone knows someone looking for part time work in the Albany, NY area! Although the job does require some physical labor (the ideal candidate will be able to lift 50 pounds and will be comfortable standing, bending, squatting and reaching), it is a casual work environment and my staff routinely get to be taste testers for new cookie recipes!

All kidding aside, the job of a PA is very demanding and can be challenging. I am human, and sometimes I have a bad day or a broken leg, and I just don’t want to have to deal with people because I am in pain and frustrated – even though I need a person to be in my space so I can go to the bathroom, get undressed and go to bed. My PAs are also human, and sometimes they have bad days, or sick children, or hospitalized parents, or dying pets. When these things happen (and they have all happened this year), it can be difficult for both me and my PAs to tolerate each other.

But my PAs keep coming to work. They are pleasant and upbeat, even when I complain non-stop about pain. They help me with my physical therapy and stretching, even when I swear and grimace every time my knee moves from extension to flexion. They find creative ways to style my hair to help hide the shorter patch which is still growing back after the nurses cut it out when they removed the central line from my neck. They learn new ways of performing tasks as my body changes and I lose muscle strength and range of motion. They adjust to new routines as I settle into my new home. They are patient when I am delayed returning home because the bus was late to pick me up.

The women I hire are my arms and legs. They make it possible for me to remain active and engaged with my friends, family and colleagues. Without Michelle, Sally B, Stephanie C, Caroline, Ronda, Amie, Tina, Therese, Stephanie M, Sally W, Lisa, Sarah, Esther, and Margaret I would not be able to live an empowered life. I am grateful for all the tasks they perform day in and day out, with diligence and dignity.