The Value of Being Able to Get Out of Bed Each Morning

Posted by Michael Collins in Life After Paralysis on November 15, 2016 # Caregiving

When I became paralyzed in 1988 it didn't take long to realize that there were about to be some significant changes in several aspects of my life. The intense education started immediately when I was wheeled out of the intensive care unit and into my room in the rehab ward.

It soon became apparent that most parts of my body had changed; I even had to learn to sit up again, a process that seemed to take several days. At first my blood pressure would drop and I would be on the verge of passing out whenever the nurses increased the angle of an adjustable wheelchair past a certain point. The process was frustrating, but I definitely did not want to remain in that bed with metal railings surrounding me for the rest of my life.

Fortunately, a vertical seated position was finally attained and I could sit in a wheelchair and be wheeled to the gym, where therapists of all types worked with patients.

Terms like range of motion, autonomic dysreflexia, muscle tone (spasticity), deep vein thrombosis, digital stimulation, catheterization and more were explained in detail in piles of paper that were given to me to study. Many of the warnings contained therein threatened dire consequences if the proper care and attention was not given to seemingly minor warning signs that I would have ignored in my "prior life." Thankfully my cadre of "instructors" included a palette of therapists (physical, occupational, recreational), doctors, nurses, phlebotomists, nutritionists, psychologists, social workers, nurses' aides, and several other specialists that were brought in for treatment of any unusual problems that arose.

At the time I was injured, my medical insurance policy apparently provided better coverage than today's policies when it comes to the length of a hospital stay for recovery and rehabilitation from a spinal cord injury. In my case, thanks to a few complications and intervening surgery, I remained in that facility for over six months.

With everything that had to be prepared for me to live independently outside the hospital, I have no idea how I could have been ready for a return to life in the community in the very few days or weeks of inpatient rehabilitation that are allowed by most insurance coverage today, especially Medicaid and Medicare.

Another huge reality awaited me when I started to plan for life post-discharge.

Thanks to an inability to use my arms and hands in a "normal" manner, my future included a daily need for assistance from others in order to perform many of the bodily functions and other tasks that I had been able to perform independently prior to my injury. In my mind that was "the curse of quadriplegia" or, as it later became known, tetraplegia.

In the hospital I had no problems when it came to finding someone to help me, as plenty of personnel were available to meet my every need once I pushed a call button. On the outside it would be a different story, as I would need to find individuals to assist me with critical, yet basic, bodily functions and other Activities of Daily Living.

Over time those helpers have been known as many different things: caregivers; home health aides; certified nursing assistants; attendants; and personal care assistants. There were times when family members stepped in due to emergencies or while traveling, and more endearing terms were in use on those occasions.

Recently I was asked about the value of the different duties provided by my caregivers, and which I valued the most. As I pondered the question, it became clear that everything that is done for me is something that I would be "doing without" unless I had their help. They are called Activities of Daily Living or Essential Functions for a reason, and I would not want to forgo any of them.

I recalled the warnings from medical professionals about how sitting for extended periods of time can shorten a lifespan. Since that is how I spend my entire time while out of bed, that warning is not much use to me.

One of the real dangers of spending too much time in bed is posed by bedsores, or pressure ulcers, which can be life-threatening to people with paralysis and should be avoided or prevented at all costs. That is one more reason to minimize the amount of time we spend in bed except for whatever hours are needed for sleeping.

After consideration of the above, I have decided that the most valuable service provided by my caregivers has been the act of getting me out of bed and into my wheelchair each morning. There are several other activities involved with making that happen, especially if I also want to be clean and wearing clothes, but the real measure of success is being able to drive my wheelchair out of the bedroom by myself in the morning.

How much value do I place on being able to get up in the morning? A lot. That is why I think it is important to recognize the dedication of the millions of people around the world who provide our care and made sure that those of us who could not do so by ourselves were able to get out of bed this morning.

To all of you who serve as a caregiver, especially the dozens of you who have assisted me during those 28 years, thank you for what you do every day. Remember that November is National Family Caregivers Month, and please know that we are beyond grateful for you and appreciate everything that you do.

© 2016 Michael Collins

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.