In May, I interviewed three individuals who experience life with a spinal cord injury (SCI). They, like the rest of us, have had to deal with the challenges of self-isolation during the pandemic. Currently living in different parts of the US, they thoughtfully and candidly answered my questions about their quarantine experience.  Terry Chase is from Colorado. James Murtha lives in Michigan. Barb Schoen resides in Texas. Their personal introductions follow.

Terry Chase

James Murtha

I had a spinal cord injury on October 5, 2014 and am paralyzed tetraplegic C-4/5 incomplete.

I have a Master’s degree in Social Work and work in the mental health field as well as volunteer in political advocacy and creating adaptive products to make my life easier. Before Corona, I was living in my own one-bedroom apartment with my service dog, Phoenix.

Barb Schoen

I acquired my C-5/C-7 spinal cord injury in December 1997 in a motor vehicle accident and have benefits through no-fault insurance. These benefits have kept me healthy and helped me maximize my life as an individual with a severe disability.

After my injury I acquired a Master’s and a PhD in Rehabilitation Counseling from Michigan State University.

I currently live in Mission, Texas, and work as an Associate Professor at the University of Texas Rio Grande Valley (UTRGV). I spent the first seven years of my academic career at the University of Texas at El Paso (UTEP) where during part of that time I served as the Program Director for the Master of Rehabilitation Counseling Program. In 2017, I made the decision to relocate to UTRGV to focus on my true passions, teaching and research.

During my 10 years in Texas I have lived in border communities near some of the most dangerous cities in Mexico. Despite insurmountable challenges, both El Paso and Rio Grande Valley have a collective spirit of community and determination to work together to overcome the significant health and service disparities they encounter. I am proud that I’m able to help make a difference.

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Each of my interviewees answered the same questions about their quarantine experience. Their answers follow.

Interviewer: Please describe your living circumstances during the lockdown months.

Terry: I live in my own home with my married partner. I am independent in all activities except picking up dog poop along my yard’s rough terrain. I have continued to work from home as a professor and coach. The one thing that has changed is that I’m not driving all over town with students since the lockdown orders were issued.

James: Since Corona, I have been living with my parents at their house in Saline, Michigan. For a brief period, I had my usual care agency personal attendants coming over to my apartment. Then once the stay-at-home order was enacted, my parents volunteered to take on all my care to keep the three of us safe. Typical daily activities have changed throughout the quarantine. At first, I was kind of blowing in the wind, jumping from activity to activity, days unplanned.  Recently, though, I have created a not-too-overextending daily schedule and added little time management techniques including the Pomodoro strategy which involves taking pre-planned breaks.  I’ve also set new goals, which have helped me to keep my mind active and to not dwell on the current global situation too much.

Barb: I currently live in an accessible house in a gated community about 10 minutes from the university. I am blessed to have 24-hour nursing and share my home with four cats (two 13-year old’s and two recent rescues).

I telecommute to work and have kept surprisingly busy with teaching, research, and service activities. I keep a regular schedule, getting up in the morning and heading to my home office where I spend most of my day and quite a few evenings. I’ve never been good about separating work from home so not a lot has changed for me in this area. Because I have 24-hour nursing services, I do have people around so I’m not totally self-isolating. Still, I’m not engaging with colleagues and friends in a personal way. In this quarantine, I miss the occasional play or dinner out with friends.

Interviewer: What has been the most difficult stuff to deal with during the lockdown?

Terry: I miss seeing my students and assisting with their development in becoming good nurses.

James: The most difficult thing to deal with during the lockdown has been taking care of my mental health, particularly with wondering if I am spending my time wisely. I see this time as a possible gift, or opportunity, and don’t want to look back wishing I had done something more useful. It has also been challenging having my parents take over all my care because I get concerned about asking them to do too much. I don’t want them to either physically hurt themselves and/or burn out. I have missed getting out and around town.

Barb:  

• The fear of catching COVID-19.

I recognize with my diminished lung capacity and age that If I acquire the virus it will be a challenge and likely a fight for my life.

• Not being able to control my environment 100%.

While I have personally self-quarantined for over two months my caregivers do not have that luxury. So, I am only as healthy as they are. We practice safe techniques, (e.g., wear masks and clean surfacesdown twice a day). Still with the estimate of 70% of the population ultimately catching the virus I constantly live in fear every time I have a sore throat, headache, or slight temperature.

• Long term access to food and personal protective equipment (PPE). 

While I currently have a decent supply of masks and PPE for my nurses and food in my freezer, I am concerned that this pandemic will get worse and these items will become in short or no supply. Three of my orders through Amazon for medical supplies have not made it to my doorstep (they appear to have been intercepted along the way).

• People not taking this pandemic seriously.

I fear this will result in limited access to food and PPE as noted above.

I miss shopping and eating out. Every Sunday was my day to put work aside and get out and enjoy a great meal and the joy of shopping. I never really bought much. It was just the opportunity to look around at pretty things. I think it was an escape from my everyday life, endlessly running round and round in the proverbial hamster wheel of frantic monotony. Occasionally I still enjoy a nice to-go meal and shop online, but it’s not the same.

Interviewer: What has sustained you throughout this time of self-isolation?

Terry:  I have many personal and spiritual practices that have helped me during this time. I have had more time to meditate, play guitar, and do creative projects.

James: When it comes to what has sustained me during this time, I think it would come down to staying busy in ways that feel valuable and staying connected. During this lockdown, I’ve made it a goal to really work on myself and take care of many things I have been neglecting. I have been reading a lot of books and taking some free online classes; trying to work on my reading speed and my own efficiency with personal management. Like I alluded to before, scheduling, and other techniques have helped because routine is important. Journaling has also been valuable.  Video chatting with friends and family members has been reassuring.  I shamefully admit I often don’t have the desire or energy to talk to other people, but then I know it is very important for my health and wellness.  I usually feel better after I decide to connect; so good conversations keep me going.

Barb:  Staying in touch with friends and family through phone calls and weekly virtual visits with sisters and extended family has been heartening. My sister and I will record and watch television shows together even though we’re 1400 miles apart. I have also found comfort in the fact that I am financially stable and able to telecommute for work. Finally, the support of my family and caregivers is immeasurable.

Interviewer: Upon reflection, what are three unexpected good things that have come out of this pandemic quarantine experience?

Terry:

1. I now know I am ready to move toward an independent Personal Coaching Practice and let go of full-time teaching.
2. I have enjoyed more bike riding miles and more consistent horseback riding sessions.
3. I have had greater companionship time with my partner and with my dogs, along with more time to read and listen to books on Audible.

James:

1.  I have reached out to and spent more time with people who were already distant from me (living across the state, country, or globe) than before the pandemic. I hadn’t been giving as much of my attention to many friends and family members before, because of the mindless hustle and bustle which created tunnel vision and disillusionment. Now I feel more connected with important people in my life, at least somewhat. 

2.  I have learned that, despite not being able to individually move my fingers, I am a decent sketch artist and a great guesser when it comes to figuring out what other people are drawing! I have spent quite a bit of time on apps such as Houseparty with friends and family and have gotten pretty good at “drawing” games.

3. Third, one of many other things I have learned, has been realizing that life keeps moving on, even during a lockdown. Time waits for nobody and it still flies by. I can’t believe it has already been nearly 2 1/2 months and people do adapt. Those in my circles and I have adapted to the situation and are still moving forward.

Barb:

1. An appreciation for a time without quarantine.
2. The hope that this will shine a light on what life is like for many people with disabilities who live a life of quarantine due to lack of transportation and personal assistance.
3. The generosity and bravery of home health care workers. I had a situation where I needed coverage and asked a nurse who didn’t work regularly with me if she could come over. In good conscience I told her she was covering for a nurse who while not diagnosed, was symptomatic for COVID-19 (fortunately she was not positive). Initially the PRN nurse said no because she worried about risk to her children. She called me back within minutes stating, “I’m a nurse and ultimately became one to help people. I’ll be there tomorrow and pray for the best.” It brought me to tears.

Interviewer:  Finally, what advice would you pass along to our readers who live with SCI and are still forced to shelter in place?

Terry: 

• Focus on the question: what do you want to create?  Choose to be a creator rather than a victim.
• Learn something new.
• Polish an old skill.
• Call some people; have a conversation.

James: 

• Figure out what works for you. You may have other priorities and not agree with the way I manage my time; and that’s OK. Figure out what is important to you, hold onto it and pursue it more fervently than you ever have.
• Journaling and tracking what you are grateful for doesn’t hurt either.

Barb: 

• Focus on what you can do. I’ve taken this approach since I first acquired my spinal cord injury over twenty years ago. It has helped keep me busy and relatively content. So, while it may be easy to say, I do think that it’s important to find things we love and then focus on those areas.

• Try to help others when possible. I had some craft kits from Oriental trading for a party I planned before the pandemic put the event on hold. One day I saw the box just sitting there in my spare room and thought I could share it with others. I sent a text to my neighbors with pictures of the crafts and asked if anyone wanted them for the family. The response was instantaneous. At least seven families responded, and I was able to give parents and their children a few hours of fun activity.

• Reach out for support when you need it. Support comes in many forms. It may be calling a friend or family member to tell them how lonely, sad, or mad you feel. You may also need the help of a professional counselor through an organization or agency that provides tele-counseling.

• Make lemonade. Make the best of your downtime by cleaning out a closet or a kitchen cupboard. While I’m still working, one of my sisters who is off has taken the opportunity to walk every day and clean her yard and basement. She has made the biggest pitcher of lemonade I’ve seen.

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This article was first published at the University of Michigan, Michigan Medicine website: https://medicine.umich.edu/dept/pmr/research/research-areas/spinal-cord-injury-research/michigan-spinal-cord-injury-system-mscis/sci-news-events

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Looking forward to your comments,

Sunny