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.

30 Days of Thanks Day 15 – Mary Frances

I first wrote about Mary Frances earlier this year. Mary Frances was the woman I was fortunate to share a room with during my stay at Sunnyview Rehabilitation Hospital. Some of my newer readers may not have had a chance to read about her, so today I am recycling this post in honor of the woman I am now proud to call friend.

I met Mary Frances shortly after my arrival at Sunnyview Rehabilitation Hospital on January 27. I was sprawled on my bed, waiting for the next doctor to assess me, counting down the hours until I could take more pain medicine. The nurse was attempting to make my broken leg more comfortable by rearranging the pillows while giving me information about the unit. She looked up as a woman was wheeled into the room saying, “And here’s your roommate, Mary Frances.”

Hello. How are you? Welcome to rehab.

The sonorous voice modulated in pitch and prosody, the syllables elongated – a technique I used to teach my clients when I worked as a speech-language pathologist. Mary Frances sat regally in her institutional chrome wheelchair, feet firmly planted on the foot pedals. Her slightly askew smile lit her face and the twinkle in her eye told me we were definitely going to cause a ruckus together.

My years of employment in a variety of healthcare facilities gave me multiple opportunities to observe the social interactions between patients and their roommates. The right roommate can make or break  your rehabilitation experience. Negative roommates or those who complain nonstop can make recovery more taxing for the people on the other side of the curtain.

Mary Frances was the best roommate I could hope for. She was optimistic, intelligent, determined, and talkative. We bonded quickly as we shared our respective stories. Mary Frances was recuperating from a stroke which had affected both her fine and gross motor skills as well as her speech and language. Like me, she was learning to do everyday tasks a new way.

The two of us connected over the silliest rehab moments – things which were incredibly meaningful to us but perhaps not to an outsider. She was seated on the other side of the curtain the first time my occupational therapist and I attempted to use a slide board to transfer me onto a bedside commode. I can only imagine what we sounded like as we struggled to find the right positions and hand holds. When my session was over, mission successfully accomplished, I saw that same gleam in her eye as she congratulated me.

You peed on the potty like a big girl! 

Each night, we watched Jeopardy! together. Mary Frances didn’t mind me blurting out the answers to questions. A former teacher, she did well on the literature and history questions. She also beat me on most of the pop culture questions, even with her speech delay.

Mary Frances was determined to do her best every day. She challenged herself in her rehabilitation, often working on hand exercises during down time in our room. One afternoon I returned from the therapy gym to find her making faces at herself in a small hand-held mirror. She attempted to excuse herself for what she assumed must look like silly behavior. I laughed at her, and asked to see her speech therapy homework. Thus began our daily routine of extra speech and language assistance. We spoke to Mary France’s speech-language pathologist who agreed extra practice would be wonderful, as long as it reinforced what they were working on in therapy sessions.

Mary Frances wasn’t my client and I knew it was unethical for me to act as her therapist. However, having the opportunity to use my clinical knowledge to help her provided a reminder that I was more than just a patient. At night when we practiced conversation repair, word finding techniques or facial exercises, I was able to escape from my own pain and injury for a brief time. I felt better because I was helping a friend who was making improvements each day.

Patients at Sunnyview are welcome to move independently about the facility as long as they have been cleared by therapy and nursing. Once cleared, you are given a green wrist band to indicate your freedom of movement. Not knowing this rule, I had been wandering the halls for two days before receiving my green tag. Mary Frances received her green tag a couple days later. We would go down to the cafeteria together for real coffee (Starbucks, not the kind they sent to our rooms on the morning trays). If she was too tired to wheel herself down the carpeted hallway, I sat closely alongside her so she could grab my handlebar, giving her a tow with my power wheelchair. Staff laughed at us before they realized they probably shouldn’t encourage this behavior. We ignored their warnings. Although we worked diligently, we both knew how to be non-compliant at times.

Mary Frances was self-conscious about her oral weakness and took steps to eat without drooling her food and beverage down her clothes. A few days before her discharge, we sat in our room eating roasted peanuts. Mary Frances concentrated all her energy on using her weaker hand to pick up the individual nuts and put them in her mouth. I asked Mary Frances if I could write about her and our rehabilitation adventures on my blog. She stilled her hand, swallowed her mouthful, and thoughtfully gave me verbal consent. I thanked her, then made a comment about how well she was doing eating the nuts without drooling.

Survivors adapt. Other people drool. Put that in your blog!

Survivors adapt. Two simple words with a meaning much more complicated and nuanced.

Thank you Mary Frances for helping me adapt to my new normal. Your encouragement and optimistic support made my rehab journey fun, something I never considered as a possibility. I am grateful for your friendship and so happy we have kept in touch. You continue to inspire me with your progress and improvement.

 

Photo of a waterfall seen through ferns and leaves.

Six Months of Practicing Daily Gratitude

Six months ago, Wednesday, January 11, at this very moment, I was writhing in pain on a gurney in the emergency room at St. Peter’s Hospital waiting for the results of my x-rays. I was trying not to snap at my sister Sandy, alternating between bursts of crying followed by deep breathing. Every fifteen minutes or so, when she would try to tell me to calm down and not think too far ahead, I tried to ground myself with a gratitude list.

I am not alone.

You are here with me.

They finally got an IV started.

The orthopedic intern is cute. Cocky and arrogant, but cute.

I am not in a coma.

They brought me a warm blanket.

I can feel my feet.

That was the list. I kept repeating variations of it throughout the evening as we received confirmation of my broken femur and I was admitted to a bed on the orthopedic unit. The list grew throughout the night. I was grateful for surviving the transfer from the gurney to a hospital bed, a roll on and off the bed pan, and the manipulation of my leg into an immobilizing splint. I doubt I adequately conveyed the depth of my gratitude to Sandy for her willingness to spend that first night with me and adjust my bed every 15 minutes. The hospital was unable to locate bed controls I could operate independently, so Sandy pushed the buttons on command as I begged her to raise and lower my head and feet, adjusting pillows along the way.

I am not alone.

You are here with me.

My feet are warm.

The pain meds are working.

I am not in a coma.

I only broke one leg. Can you imagine if they were both broken?!

Over the next 2 days while I waited for surgery, the list changed. I was grateful to several nurses, but after four failed attempts I was especially appreciative of the fifth nurse who tried to insert a catheter into my bladder around 10:30 PM Thursday – the one who FINALLY got it. I was grateful for my boss, who stopped by to tell me not to worry about work. I was grateful to my friends who came to relieve Sandy so she could get some rest.

I am not alone.

You are here with me.

They are going to be able to do surgery.

I can drink all I want without having to worry about transferring to the bed pan since they finally got the catheter in. Did you ever think I would be grateful for a catheter? Thank God I have a sense of humor.

Thank God I went to Australia last year!

I’ve written about my experience with rehab, and the transition home. I’ve shared my triumphs publicly along the way through my blog and social media- transferring in and out of my van, driving, and returning to work. My updates have been some of my “most liked” posts, garnering many comments along the lines of “Atta girl!” and “Good on ya!” Throughout it all, I kept finding ways to be grateful. Even when I was in the middle of a “this-sucks-and-I-HATE-that-everything-has-changed” self-pity cry fest.

I am not alone.

You are here with me.

I have heat.

There is food in my fridge.

I can binge-watch ‘The Doctor Blake Mysteries’ all afternoon if I want and find out if the good doctor ever finally ends up with Jane.

My job allows me to work from home, for the most part.

Thank God I have an understanding employer.

Six months after the latest event which completely changed everything about my life, I recognize my significant progress. I am thrilled to be driving – yet still remain dependent on others because I cannot independently transfer from my driver’s seat to my wheelchair. I am grateful to have new Personal Assistant staff – but remain distrustful due to recent burglaries at my home. I am excited to see improvements in my knee strength and range of motion – but the chronic pain is exhausting. I realized last week that I no longer complain about pain in any other part of my body. I don’t even notice pain anywhere else anymore because it doesn’t compare to the pain in my knee. That’s not because I’m taking pain medications. I mentioned the burglaries, right? Guess what was stolen?

The biggest hurdle is my inability to access a toilet outside my home. Since I am still not weight-bearing on my broken leg, I cannot perform a stand-pivot transfer from my wheelchair. I use a slide board to transfer on and off the toilet. The board I use, combined with my limited trunk control, requires me to transfer on/off a platform seat. I wrote about this when I described transitioning home from the rehab hospital in this post. Since the only toilet I can use is located in my house, I am limited in how long I can be away from home.

Think about the number of times you use the toilet throughout each day. Now, imagine you have to return to your house every time you need to use the toilet. It doesn’t matter if you have a meeting, or a lunch appointment, or plan to volunteer somewhere in your community. Now, imagine you not only need to return home, but you need to have a nondisabled person at home with you every time you need to use the toilet. Then, imagine you are a menstruating female and think about using a slide board while you are bleeding for five days each month. Or, transfer onto your bed to use a bed pan.

Too graphic? Sorry – but it’s reality. And reality is not pretty. It’s messy and complicated. Life is like that for everyone, not just those of us who live with disability.

It is the main reason my gratitude lists “post femur fracture” are particularly important now. Because when I am stuck in the middle of of a “this-sucks-and-I-HATE-that-everything-has-changed” self-pity cry fest (and there have been lots of those these past six months), one of the only ways I know to pull myself around is to force myself to grateful. I don’t have to be grateful for the pain, or grateful for the fracture which is giving me plenty of life lessons and fodder for writing. I just need to concentrate on the start of my list, the same two lines I use to start every gratitude list I make.

I am not alone.

You are here with me.

Strength is not found in the number of repetitions performed during an exercise routine. It is not described in the extra degrees of range of motion measured during a physical therapy re-evaluation. The strength to endure comes from knowing the burden is carried by more than your own shoulders. The strength to persevere comes from understanding we don’t have to face our latest challenge alone.

Mission Accomplished!

For the past five months, I have posted rehabilitation updates on my Facebook feed as I reached rehabilitation milestones. I have been overwhelmed by the support and encouragement from hundreds of friends whenever I shared a progress report. Yesterday, I shared an important update – one I was not confident about achieving back in January when my former personal assistant dropped me and I fractured my femur

Rehab update: I have been discharged from outpatient physical therapy (PT)! And my sitting left knee flexion is 90 degrees! Without pain! 

Yes, I have been discharged from outpatient PT! The range of motion in my left leg has improved dramatically from January. Although pain is still a frequent companion, it is less debilitating than it has been in months. My tolerance for physical activity has increased. I have lost twelve pounds since my discharge from the rehabilitation hospital in February.

Do I sound like I’m bragging? I AM!

On January 11, while sobbing on my bedroom floor waiting for the ambulance, I knew I had sustained a life changing injury. When you live with a progressive neuromuscular disease, you know these types of events can strip you of independent mobility and function. It has happened to me in the past, and I was fearful of how this incident would impact my daily life.

I knew recovery would be a long, painful process. I was not wrong. There have been countless times when sudden pain caused instant tears and furious outbursts of expletives. Rehabilitation has been tough, and certainly not pretty. I have been cranky, moody, short-tempered and brusque with those who love me. I have snapped at family members who offered assistance, and pushed away well-meaning friends because I didn’t have the energy to be social.

But I am not a quitter, particularly when an orthopedic surgeon who doesn’t know me well tells me I will never do something again. Those who DO know me understand the best way to get me to do something is to tell me you doubt my ability to get it done.

And I don’t know how to fail with humility and grace. If I set my mind to do something, I stubbornly persist until I have accomplished the goal.

Back in January, I could not predict how long it would take me to get to this point or if I would ever get to this point. Yet, somehow I have made significant progress and my therapists feel I can be set free to continue rehabilitation without their assistance.

I WILL continue my rehabilitation program even though I have been discharged from PT. I know it is working. I see it in my movements and feel it in my leg strength. I have worked too hard to stop now. The scary truth is this injury may have finally created what physical therapists have tried to create since I first started PT as a child back in 1978 – a Denise who voluntarily engages in and enjoys routine exercise.

Current status: Relaxing with a gin and tonic while shopping online for a cute bathing suit in a smaller size. 😉

 

 

On the Road Again

One of the biggest hurdles in my recovery from my broken femur has been driving. I drive an adapted minivan, a sleek silver vehicle I have named Clyde. Clyde has a ramp which allows me to drive my wheelchair in and park it where the middle row of seats would normally be. My driver’s seat is mounted on a transfer seat base which allows it to swivel. I slide out of my wheelchair into the driver’s seat, rotate the seat to the front, slide forward, and drive. At least, that is how the process has worked for the past fourteen years until my orthopedic surgeon restricted me from putting weight on my left leg after surgery.

Since February I have worked in physical therapy to regain strength and function with the goal of being able to independently transfer in and out of my driver’s seat. My apartment is located in an area not served by our local public transportation. The disabled paratransit service does not come to my apartment as I live too far from a fixed bus route.

If I cannot independently drive, I have three options. I can ride as a passenger in my own van while someone else drives. I do this when I have to, but I am a terrible back seat driver in my own vehicle. Another option is to have someone help me get in my van at my starting location and someone else help me get out of my van at my final destination. Or, I can have someone accompany me every time I need to drive somewhere.

I have used each of these methods to remain employed and engaged in my community, and I am appreciative of the friends and family who continue to assist me. But when you are used to the having the ability to get up and go whenever you want, scheduling your activities around someone else is limiting. Like most people who have been driving for decades, I am used to the freedom of movement which comes with the privilege of being a licensed driver who owns a vehicle.

In early April, I reached an important rehabilitation milestone when I successfully transferred in and out of my driver’s seat. I required assistance, but I did it! After a few practice sessions, I began to drive around my neighborhood. Within two weeks, I was driving to and from my office once or twice each week. My knee protested from time to time, and realistically I was unable to drive for more than 45 minutes at a time before the discomfort became too much of a distraction. But I was driving!

Behind the wheel for the first time in April.
Behind the wheel for the first time in April.

This past Tuesday I reached an important milestone when, for the first time since January, I transferred into my driver’s seat and put on my seatbelt completely independently! It took me a good five minutes, and there were a few choice words flying out of my mouth from time to time, but I did it!

I still require assistance to get out of my driver’s seat and get back into my wheelchair, so I am not completely independent with driving. I don’t know if I will reach that status given the changes in my leg. This may be as far as I get with my rehabilitation when it comes to driving. I plan to make the move to driving from my wheelchair using hand controls within a year, so I just have to find a way to function until then.

For now, I know if I had to get somewhere in an emergency, I could get in my van and go. I might not be able to get out when I get there, but that’s a problem for another day.

My experience has given me a new perspective on the transportation difficulties people with disabilities face on a daily basis, particularly those who live in suburban or rural areas. I have not been as strong of an advocate for transportation as I could be. I plan to change that going forward. The push for community living can only be successful if people have access to their community and accessible transportation is a crucial component of independence.

In the days immediately following my discharge from the rehabilitation hospital while I was relearning how to function at home, I wondered if I would ever be able to take a road trip and spend the night anywhere other than my apartment. I enjoy traveling and the prospect of not being able to explore the world was frightening and depressing.

This is Memorial Day Weekend in the United States, the unofficial start of summer. I have spent every Memorial Day Weekend in my hometown except the year I was an exchange student and the year I was in the hospital after my gallbladder surgery. I was determined to find a way to make it home this weekend. Once I transferred into my driver’s seat on Tuesday I knew it would happen.

Yesterday I drove my van down the highway in the bright sunshine. I rolled down the window, cranked the music and sang the songs from my “move it” playlist with the wind blowing on my face. As I rolled to a stop at the end of the exit for Bainbridge, I couldn’t help smiling in triumph.

Sure, there is more work to do in my journey towards independence. But this weekend, I am content to be on the road again.