Stories from a Spinal Cord Injury Survivor: A Patient’s Perspectives

SCI Survivor

One of the reasons I love my OT program is that my instructors understand the importance of the “patient perspective.” Many of my homework and class activities have focused on understanding the experience of the clients OTs work with, and how personal factors (in OTPF language) can impact their recovery and the therapist’s treatment. My classes also often include guest speakers with all kinds of experience and commentary, as well as enlightening field trips to businesses I will likely work with in the future (i.e. a local medical equipment company that sells power and manual wheelchairs and other mobility devices). The OT program is also housed in a great allied health department that often hosts speakers and presentations on a variety of topics related to the patient experience, and I try to attend as many of these programs as possible.

One of my favorite things about having class speakers with various diagnoses and experiences is that it truly brings my textbooks alive. It’s one thing to read about “autonomic dysreflexia,” “intermittent catheterization,” and “psychosocial factors” in a textbook chapter about working with spinal cord injury (SCI) survivors, and another thing ENTIRELY to have an SCI survivor and his wife and caregiver talk to you about their experiences with these things across the continuum of care (hospital to rehab to discharge home).

That brings me to the point of this post: recently I was fortunate enough to meet and learn from a man named “Brian,” his wife “Sarah,” and his caregiver “Tonya.” Two years ago Brian was riding his motorcycle with a friend when he was struck by a distracted driver who was texting at the time. Although Brian was wearing a helmet and there was apparently not a physical scratch on him after the accident, he sustained a high level (C5) spinal cord injury that left him with little function in his neck, limited function in his upper extremities at the shoulder, and virtually no motor or sensory function below the shoulders. To gain an understanding of the specific regions that were paralyzed and functions that were affected, you can check out this diagram.

The accident was a very traumatic life experience, but in talking with Brian you would hardly know the true depths and trajectory of his recovery. He was a good-natured jokester with a white beard who, alongside his wife Sarah and longtime caregiver and friend Tonya, had a very positive outlook on life and a great deal of helpful information for soon-to-be therapists like myself and my classmates.

This post is about the lessons I learned from talking with Brian and his crew last week and why they are so important for me to keep in mind as I get closer and closer to being an OT practitioner.

Brian Resized
“Brian” and his wonderful wife “Sarah” were fantastic speakers, and I’m so glad I got the chance to learn from them!

Consider the Caregiver(s)

During the hour and a half conversation we had with Brian, Sarah, and Tonya, it became apparent that something to be aware of and monitor as a future clinician was the condition and status of a client’s caregiver(s). For example, at one point Sarah described how when Brian first came home from the hospital she “never got any sleep” because he had to be rotated in bed every two hours. Additionally, she and Brian live with her 93 year old mother, whom she also takes care of. Although it’s true that you work closely with an individual client and your job is to help him get better, it is absolutely crucial that you consider the habits, roles, and routines of a client’s caregiver(s) and family members and how they may change after a diagnosis, hospitalization, or injury. As an OT, I can help support caregivers by connecting them with local respite care services, referring them to mental health or family counselors, or simply asking them how they are coping throughout the recovery process and letting them vent or helping them problem-solve any challenges they might be facing. As a therapist, working with caregivers to help lighten their load is a crucial part of the job.
See the links at the bottom of this post for more information about caregiver resources.

Advocate On and Off the Clock

Another important lesson I took away from the conversation was about the importance of OT/A students and practitioners advocating for their clients not only in the clinic, but in a broader sense as well. For example, Brian described his frustration with the limited number of outpatient therapy visits he had left after being discharged from the hospital. He had 20 visits, and although it was unclear whether this was 20 visits with an OT or 20 visits across multiple therapies combined, in any case it was clearly not going to be enough to help him recover significantly. While you can hear about the importance of Hill Day, read articles about the need for professional involvement in political advocacy, and even participate in fundraising activities for organizations like AOTPAC, hearing the stories from real clients who are being failed by the system definitely puts a human face on what can otherwise be a seemingly “distant” issue.

Check out the AOTA Legislative Action Center for more information about how you can get involved and support quality healthcare legislation and policy for your current or future clients!

Keep It Clean

This next lesson is a tip from a pro: Brian’s personal caregiver (and close friend) Tonya advised: “Your patients will love you if you will just help them take a shower.” At first her words were funny, but when she and Brian began to explain how meaningful this act could be for a stroke injury survivor – or a physically disabled client in any setting– it was more sobering than silly. As simple an act as it seems (believe me, it’s super complex in reality!), simply taking a daily shower can really make a difference in the physical and mental health of many clients. Brian described how he wouldn’t get to take showers for over a week at the hospital because “nobody had time to do it,” and how not having the chance to shower disrupted his normal routine and made it more difficult for him to feel good about himself as he worked to recover. He also talked about how he really enjoyed the sensation of the water on his upper body, and how the warm water helped him prevent the whole-body spasms he developed as a side effect of his injury.

Long story short, even if you can’t get into the shower, having a client help bathe himself in bed or wherever he is able (as a sponge bath or with a wet cloth) can go a long way towards improving his morale and self-concept.

Mind Over Matter

Although it’s absolutely crucial to take the appropriate precautions to keep clients with physical injuries safe and provide the best rehabilitative care possible, Brian and his companions were a prime example of how psychological, psychosocial, and emotional recovery can be just as – if not more – important than physical recovery for many clients recovering from physical trauma.

For example, Brian described how he never wanted to leave the house when he first got home from the hospital because he was embarrassed about using a wheelchair and having his wife feed him. He was also very reluctant to switch to an indwelling catheter that would not require daily insertion because he felt as if having the procedure done to insert it meant he was “going backwards [in his recovery],” although it would have eased his caregivers’ burdens significantly. His wife Sarah also experienced emotional challenges after his return home. In response to a question about sexual activity after an SCI, his wife tearfully explained how intimacy meant so much more than just sex, and how the loss of intimacy with her husband after his accident affected her: “A few days ago was the first time Brian was able to hug me with both arms. I haven’t gotten a hug in two years, and it was huge. For a long time I would just sit and watch other women hug their husbands, and I wouldn’t say anything. It just meant so much to me.”
Just imagine the implications of these behaviors, thoughts, and emotions for your client and his friends, spouse, children… Brian went from being an active, outgoing man to staying in his home and avoiding contact with others. Additionally, by deciding against the indwelling catheter, Brian was exercising his right to control his body but his decision was largely motivated by fear and uncertainty, not by any sound medical knowledge. It made his toileting routine more challenging, and may have even contributed to his not wanting to leave the house and tension with his wife, who wanted him to have the procedure done to help ease her caregiver burden. Finally, the lack of intimacy between himself and Sarah, as she described it, was extremely emotionally challenging (perhaps for both of them). Her own feelings of loneliness or even anger about the situation likely had an effect on her relationships with her husband or others. Situations like these are a prime example of how, even after Brian’s physical situation stabilized, he and the people close to him continued to struggle with a wide variety of emotional and psychological issues.

In any setting, but especially in physical rehabilitation, it is very important to build therapeutic relationships with clients that allow them to safely express the psychological struggles they are facing*. However, by only concentrating on helping Brian regain physical function, learn how to use adaptive equipment, and manage ADLs, an OT/A could have overlooked a huge part of his recovery. It’s key to keep in mind that in many cases, if not all, there is much more that is involved in the transaction between a person, his environment, and his condition than meets the eye.

*Although OTs are qualified to work with clients with various mental health conditions, it’s important to know when to refer clients, caregivers, etc. to rehabilitation counselors or psychologists for more in-depth interventions that are outside our scope of practice.

In conclusion, I hope this post gave you some insight into the complexities involved with OT practice in physical rehab! It’s so much more than just therapeutic exercise and ADL training, and requires that a professional be deeply aware of not only what is going on with the client’s physical body, but his social, emotional, and psychological environment as well.

Although this ended up being a rather lengthy blog post, I feel like it was important for me to write down and remember the lessons I learned from Brian, Sarah, and Tonya. As I continue through my OT program, I hope to continue looking holistically at clients like Brian and others, and making sure that the services I provide meet their needs on a variety of levels.


General Information about SCI

Caregiver Resources

SCI Community

  • Apparelyzed: This website is a great resource for people who are interested in connecting with others who are living with SCI. In addition to basic information about SCI, there are forums for discussion and advice about handling challenges related to a variety of occupations, from self-care to leisure activities, when one has an SCI.
  • SCI Video Blog: This site features user-created videos of people with varying levels of SCI engaging in a variety of tasks to help people learn how to do them or simply see that it is possible! There are videos of people waterskiing, applying makeup, and working out in non-accessible gyms, just for starters.
  • EasyStand SCI Blog: Although this blog is technically “sponsored” by the company EasyStand, it features a ton of great posts about issues related to handling SCI outside the clinic and in real life. I recommend the posts about accessible colleges, assumptions made about parents in wheelchairs, and what differentiates people who have successful recoveries from SCI from those who don’t.
  • BACKBONES: After sustaining an SCI as an young adult, founder Reveca Torres started BACKBONES to help people with SCI and their families connect with and learn from each other, as well as changing the way that people with disabilities were viewed and treated by others. The BACKBONES website has information about various events, meetups, and other programs that you can share with your clients or tuck away for your own knowledge.
  • Reinventing the Wheel: Stories of Life After Spinal Cord Injury Visual Storytelling Project: The project was developed in 2013 by BACKBONES (see above), a spinal cord injury peer-support and advocacy group, in collaboration with the National Museum of Health and Medicine in Chicago. The inspiration for the project came from BACKBONES founder Reveca Torres, after she conducted an online “disability” image search that generated mostly depressing imagery that perpetuated stereotypes and failed to reflect the real lives of individuals with disabilities. The goal of the project was to help destroy these stereotypes and show the world that people with disabilities can lead happy, successful, and productive lives.

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