Tag Archives: Health and Healing

Sidelined by Broken Wrists – Part 4 OR Why I <3 Dr. Jason Mettling, DPT

Some context: After the dancing accident, when it was clear I was hurt, my friends took me to an emergency room in Tacoma, Washington. When the x-rays came back, I learned that I had a triple fracture in my right wrist and a double fracture in my left. Miraculously, the fractures in both wrists were clean and there was no bone displacement. The physician in the ER put my arms, from elbow to finger tips, in cloth wrapped, plaster-based splints that went up the underside of each arm to the center of my palm. I curled my fingers forward over the lip of the plaster and once it hardened, the doctor wrapped gauze, then elastic wraps around my arms to my fingertips. He then put me in slings that crossed my arms over my chest, hands facing upward, and held them in place. The goal was to keep anything from moving until I could be assessed by an orthopedic surgeon. The ER doc said he hoped that nothing would move and that I would be able to avoid surgery and metal plates in my wrists.

When I got home to Wichita, my family physician took more x-rays thinking he’d just put me in casts. When he saw the extent of the damage and the fact that everything was still in place, he sent me to an orthopedic surgeon. My ortho doctor took more x-rays and as nothing had moved, decided to leave the splints on for several more weeks so that my wrists could start to heal. He said that if nothing moved in several weeks, we might move on to casting. If anything moved or was misaligned, he said, I would need surgery. After several more weeks, nothing had moved and my ortho doctor decided to keep me in splints a bit longer. He did think it was time to get my fingers moving again, so he cut the splints and the wraps to the base of my fingers so that I could move them. My fingers had been structurally paralyzed since my fall and it felt like there were fiery needles running through them when I tried to move them. The pain was excruciating.

That afternoon, I met my partner in healing, my physical therapist, Dr. Jason Mettling, DPT. To say that Jason played a pivotal role in my healing and recovery would be an understatement. He was critical to my mindset as I slowly regained capacity. He was kind, compassionate, always encouraging, always pushing (literally!!! and figuratively). He was funny; he was supportive. He was exactly the kind of engaging, involved partner I needed in physical therapy. Our personalities, our goals, my fears, my independence, my need for support, his firm direction, his clarity of purpose, his willingness to listen, to explain, and to explore, made us a perfect partnership for this stage of my healing adventure.

I was apprehensive about physical therapy. I was afraid of the pain and I was terrified that I would not be able to get full function back in my hands. Dr. Mettling built my trust from the beginning. I assumed that when the splints were cut I would be back to normal. I was wrong. I could barely move my fingers. I couldn’t touch my fingertips to my thumb. I couldn’t curl my fingers or make a fist. I had to learn to use my fingers, and later my hands, wrists, and arms all over again. This was going to be an uphill battle. When I first met Jason, he asked me if I trusted him. I replied, “I don’t know you.” He looked me straight in the eye and said “I can get you back where you were, but you have to trust me. It’s going to hurt, sometimes a lot, but there is a reason for everything we do.” His words helped counter my fear and gave me hope for a full recovery.

During our time working together, there were many ups and downs. My level of pain surprised both of us at some points. During one session I almost passed out due to the intensity of the pain. We strategized when I would take pain medication so that I would be able to work hard and endure during each session. As I reflect on Jason’s approach, I see him as a gentle torturer. He pushed me for the progress he wanted, both literally, as he applied pressure on my wrists to help increase my flexibility, and figuratively, encouraging me to do my homework.

During this process, I developed a serious dislike for wooden clothespins. Once I could get my fingertips near one another again, my next task was to regain finger flexibility and strength. My least favorite exercise involved holding a wooden clothespin between my thumb and a finger and opening and closing it. To begin with, I couldn’t open them at all. Later, I could open them a bit. Today, I can open and close a clothespin multiple times with each finger / thumb combination on both hands. I enjoyed playing in 3 pounds of raw rice more. This exercise had two main purposes. One was to get me used to resistance and to build flexibility. The second, in some ways more important purpose, was to reduce the hypersensitivity my hands and skin had developed after the accident. Any touch was painful. At first I had to put the rice in warm water and swish gently. As I overcame a bit of the sensitivity, I could play in the dry rice, moving my fingers through it, making fists around it, burying my hands in it.  I loved the tactile nature of this exercise and the progress I could see myself making.

One of the things Jason did especially well was see the advances I made and celebrate my progress. He was always encouraging. At times, this was what kept me going. I’ll never forget how hopeless I felt when I went to see my orthopedic surgeon (how telling is it that I can’t remember his name, but Jason’s comes easily to mind) and he wanted me to put my arms straight down in front of me, backs of my hands together, and then raise my arms along my body until my lower arms were parallel to the floor, all the while keeping the backs of my hands together. When he demonstrated it, I thought, “I don’t think anyone can do that! How did he DO that?” To do that, you need to bend at the wrists and elbows and keep your shoulders down. It is hard! Really! Try it! I couldn’t do it. I was only a little better at the next behavior he demonstrated. He wanted me to put my palms together in front of my face, fingertips up, and lower my arms along my body, again bending my wrists and elbows until my hands were in the Namaste position and my lower arms were parallel to the floor. While I could at least understand how this movement was possible, I couldn’t get anywhere near it. I can now do the latter one. I’m still not even close on the former. I challenge you to try both to see what I mean about how hard they are. I went home from that appointment depressed. I wasn’t making progress. I was FAR from making progress. I should be able to DO these things.

The next morning I had PT with Jason. I was still bummed when I arrived. “What did the doctor say”, he asked. I paused, “Basically, he wants me to be able to do things I’m nowhere near being able to do and I’m really frustrated”, I replied. “I thought I was doing so well.” Jason reminded me that I had been incapacitated through splints, casts, and was only now beginning to get out of my braces for short periods of time, that this would take time. He reassured me that I was doing great and that I would get there. The most important thing he told me was to remember that with the kind of injury I had, incapacitating me was the best option. We avoided surgery that way, which often leads to less satisfactory long-term outcomes. And while my short-term outcomes were more painful and more frustrating, in the long run, I would be better off. He said he understood my frustration, but that I needed to remember that my muscles had been unable to move through the splint and cast phases and that I was rebuilding my muscles and retraining my nerves. I just needed to be patient. Patience had never been one of my strong suits. I’m a “get ‘er done” kind of person. Breaking my wrists changed that, slowly, but surely.

Several times during my therapy, I hit a plateau. When this happened, it was frustrating and fear inducing. Was this the best I was going to be able to do? Had I reached my limit? During one particularly frustrating plateau, Jason came up with the idea of having me come in 15 minutes early for my appointments and put moist heat in the form of large pads around my wrists to help them loosen up and get ready for our work. That helped me get beyond that plateau.

When Jason told me we were coming to the end of my need for PT, I was scared. We had come so far, but I felt I had so far yet to go to get “back to normal”. I learned through this adventure that there are three stages in recovering from a temporary, incapacitating injury. The first and second stages overlap a bit. The first stage is simple healing. For me, this lasted 3 months as my wrists were first in slings, then in casts, then in braces. The second stage began when my orthopedic surgeon cut the tops off my slings so I could learn to move my fingers again. The pain of reactivating muscles and nerves, dormant for months, was almost worse than the pain of breaking my wrists in the first place. Then I got casts, which allowed me to do more finger work. After the casts finally came off, I went into braces which I could remove for physical therapy and to do my “homework” and which allowed me to learn to use and rebuild strength in my wrists and arms again.  I wasn’t prepared for the pain involved in this second stage or how slow the process of healing and regaining capacity would be.

When PT ended, I was ready for the third stage in recovery, refining skills and building strength over time. Slowly, I regained more and more capacity. I remember the first time I brushed my teeth. It felt amazing! I remember the first time I fed myself. My son took me out to a restaurant and I got a BLT which he cut into pieces so I could pick them up and feed myself. I remember the first time I put mascara on. I remember the first time I cut up vegetables to make a soup. Each first was hard. Many of them hurt. But, one by one, I learned to do things for myself again! The last three milestones were successfully brushing my long hair and pulling it back in a band, scrubbing my back in the shower, and hooking my bra. Life’s simple pleasures. I still might need help with a particularly difficult lid once in a while. Squishy water bottles are the worst. While I still fear hot yoga (particularly sun salutations – the downward dog to plank to chaturanga, back to downward dog part gives me heart palpitations), overall, today, little more than 2 years after I fell, I can do anything I desire. Maybe after my Florence adventures, I’ll head back to hot yoga. I thank Dr. Jason Mettling for being my inspiration, my cheerleader, my taskmaster through physical therapy. I thank him for being such an important partner in my healing adventure!

On the Importance of Support for Health Care Surrogates: The Middle of the End of SOB (Sweet Old Bill)

One day, each of us will die. I have come to believe that Dylan Thomas had it wrong when he argued that we should “Not go gentle into that good night”, that we should “Rage, rage against the dying of the light”. I now believe that going gentle into that good night is sometimes the definition of a good death. So many factors go into a good death, particularly in a culture as death averse as ours. I cannot say whether or not my uncle had a good death. I can say that he met death on his own terms. That, however, is a topic for another day. Today I want to talk about the people who made the role I played as his health care surrogate easier, because being a surrogate in the U.S. still often means dealing with a medical establishment bent on raging, on defeating death. As I helped my uncle navigate the end of his life, I was fortunate to have three strong advocates supporting me.

My maternal aunt (my uncle’s sister), a nurse, helped me stay clear when I doubted myself or my choices. She reinforced the importance of my role as my uncle’s health care surrogate, and commiserated with all the craziness I faced when dealing with insurance companies, medical providers, long-term care and rehabilitation facilities, our family, and my uncle’s friends. She let me rant. She let me cry. She listened and advised. To my aunt, I say “Thank you for your compassion, your calmness, your willingness to troubleshoot with me, your clarity, your unwavering confidence in me, and your kindness. Doing this without you would have been so much harder.”

My second support person was my friend Andrew who was there for me because he loved me. He asked the hard questions and supported me in making the tough decisions. He helped me stay clear, encouraging me to write things down, so that I would have my own words to help me sort through issues as they arose, so that when my decisions or motives were questioned, I would have clarity for myself. I wrote. Reading what I wrote at various points helped me to remain strong in supporting my uncle’s wishes. To Andrew I say, “Thank you for your insight, your  intelligence, your compassion. Thank you for holding me as I cried, for driving me to the airport, for picking my up from the airport, for bringing me flowers, for loving me through this difficult time. You are a treasure.”

My third support person was the case oversight doctor at the rehabilitation hospital. He became my lifeline. He reinforced my uncle’s right to decide, made me aware of what I would face as I advocated for my uncle in the rehabilitation hospital, and helped me negotiate the care decisions we faced. To this physician, I say, “Thank you  for helping me reach and maintain clarity, for helping me understand the mindset and motives of health care providers, for preparing me for all the challenges I would face, and for fortifying my commitment to “stay the course”, even when making a different choice would have been easier.”

As I’ve said, I’m a health communication scholar. My academic and personal work prepared me to serve as my uncle’s health care surrogate as he negotiated the end of his life. I had over two decades of my own research. I had my experiences with colleagues and friends from the Nevada Center for Ethics and Health Policy. I had tools others may not have as they take on this role. These resources didn’t change the fact that I continually and painfully second guessed myself throughout this process. They didn’t prepare me for who I was as a person, a niece, helping someone I loved in the process of dying. They didn’t prepare me to negotiate this process with health care providers, family, and friends. My second guessing came mostly from the reactions of my family, my uncle’s friends, and medical providers who disagreed with my uncle’s decisions or questioned my motives. I’m a conscientious person. If people question me or my motives, it kicks me into a process of self-reflection, looking for chinks in my commitment, in my motives. My support people made this process and all the decisions associated with it bearable.

I’m going to spend the rest of this entry talking about the case physician in the rehabilitation hospital. He and I never met in person. Through several phone calls, he understood that my uncle did not want to do anything to prolong his life: no medications, no surgeries, no hospitalizations, no invasive treatments. He also understood my uncle’s desire to be as healthy as he could for the time he had left. The doctor agreed that continuing to regain or at least maintain his strength and physical capacity through physical therapy and occupational therapy were appropriate. He also recommended speech therapy to assess whether there were any swallowing or food management issues that could be improved. He helped me stay logical and pragmatic in the face of significant resistance from health care providers.

I remember at the end of one conversation he told me that this was not going to be easy. He told me I would have to stay strong in the face of well-meaning health care providers who thought my uncle’s decisions were wrong. He told me that well-meaning health care providers would try to “gaslight” me. I asked what he meant. He said, “They will identify crises that will require more extensive medical procedures and hospitalizations. They will want to call ambulances and administer emergency treatments to save or prolong your uncle’s life. They will call you at all hours of the day and night with emergencies you need to make decisions about right then. They will not want you to take time to think”. He concluded, “No matter how they gaslight you and how urgent the emergency they present you with, you need to go down your decision tree. Given his decision and your commitment to advocating for it, except for keeping your uncle comfortable and pain free, you aren’t going to do anything else. Right?”. “No”, I answered, “Good”, he said. “You’re clear. Stay that way. Call me any time you if you need me. I’ll call you when I need you”.

He was right. Nurses called me at all hours of the day and night. The preferred time seemed to be 3 a.m. and each emergency required my approval of immediate hospitalization. Sometimes they called 911 in direct contradiction to the “no 911” directive. Twice they called to inform me that ambulances were on the way. In both cases, I refused them. The first time the nurse said, “That’s what your uncle said. We hoped you’d have more sense.” His advance directive paperwork was misplaced multiple times. The post-it notes the case physican left to reinforce the directives in his chart were either removed from the chart or the workstation, or accidentally covered up, leading to the ordering of multiple tests and procedures I had to then refuse. Late one night they called to tell me my uncle was having mini-seizures. They wanted to hospitalize him for tests. On another occasion, they thought he was throwing blood clots and that the circulation in his right leg had been cut off. On both occasions, I was lucky that the case physician was available to talk me through the crisis. He asked if I would allow surgery. He asked if I would allow any treatment beyond pain medication. My answer was “No”. The physician concluded, that it didn’t matter then if my uncle had had a stroke. Observation would confirm that diagnosis or not. It didn’t matter if he was throwing blood clots or if the circulation in his leg had been compromised. Again, observation would eventually confirm whether or not this was the case. Since we weren’t going to accept any kind of treatment, the diagnosis didn’t matter. Helping me work through the decision path, it became clear that to support my uncle’s wishes, all treatments had to be refused. He helped me understand that the health care providers in the rehabilitation hospital were only doing what they believed best, trying to prolong my uncle’s life.

These situations led me to repeatedly question my uncle’s desire to “let nature take its course” and my desire to support him in that decision. Was this the time? Could he still live a high quality life – if only we did this or that intervention? My experience as a health communication scholar and the support of my advocates allowed me to stay the course in each case, as did my uncle’s unwavering commitment to the path he’d chosen. As loved ones of those who are dying, our hope often leads us to accept medical intervention that will not prolong a quality of life and often only minimally lengthen the duration of life. Being a health care surrogate at end of life is not easy. It is, however, critically important in a culture that is death averse and within the context of a medical establishment that views death as a failure. Sometimes it is appropriate to rage against the dying of the light. At other times, it is a gift to allow a loved one to go gentle into that good night.