A spinal cord injury is life-changing for the injured person as well as their spouse or life partner
Spinal cord injuries (SCI) are hugely traumatic. We deal with the death of a part of ourselves and we turn inwards. There is the battle to survive, followed closely by the battle to rehabilitate and then there is the life-long battle to live our lives in a reduced state. Many of us have support infrastructures and the focus is on ourselves – how I can make the most of what remains of me. But what about my spouse, my life partner? How does all of this impact on them? Physically? Mentally? Emotionally?
I recently read a research article that explored the roads travelled by the spouses of seven SCI individuals, from the moment of the injury for a period of two years. I have based this article on the research findings, interspersed with a few insights gleaned from (fairly robust) discussions with my wife of 42 years. (For ease of reading I will describe the injured person as male and the spouse as female, but the findings pertain to both genders.)
At the outset, it must be emphasised that SCI couples survive better in all walks of life than SCI individuals who try to go it alone. So, do not become disheartened, work hard at building and strengthening your relationship. The key words are mutual support; the giving of yourself must flow both ways – to the utmost ability of both partners.
However, to this end, a word of warning; the older we get, the more challenging the circumstances become. Both partners move into a state of reduced abilities. The injured partner must respect this of his spouse. The trauma and challenges experienced by the spouse is described in the research article in three phases. The authors chose to call these:
- To be harmed by the partner’s injury.
- To find oneself on the outside of the partner’s life.
- To struggle for the injured partner and re-establish life as a couple.
The three phases relate to the injured partner’s movement from the acute phase of recovery to the extended phase of rehabilitation and finally into the “home straight” of returning home and rebuilding life together.
Phase 1: To be harmed by the partner’s injury
The entire focus is on the injured partner; the healthcare professionals, the concerned family and friends, even the focus of the non-injured partner. Struck by the brutality of the injury, the spouse’s own needs fade into the background. Her world comes to a standstill. She realises that she has not lost her partner, but she mourns the loss experienced by her partner.
She feels the loss and pain of the partner, but is absolutely powerless to do anything about it.
As much as the injured partner needs physical care, so the spouse needs emotional support and care. The support of friends, family and pastoral care is (usually) great, but professional care must be sought and offered. If we do not take care of ourselves, we lose the ability to care for others. Note the safety talk before take-off on an airplane; “First place the oxygen mask over your own face, then attend to others…”
The shock of the injury has a profound impact on the spouse that leaves her with a sense of vulnerability. The physical pain of the injured partner becomes the emotional pain of the spouse. The physical struggle for survival is mirrored as an emotional struggle for survival in the spouse. She becomes lost in space…
This needs to be managed for the sake of the immediate need of the spouse as well as the long-term survival of the relationship.
Phase 2: To find oneself on the outside of the partner’s life
Once the physical injuries are healed, rehabilitation starts. A team of professionals supports, trains and exercises the injured spouse throughout a long period of intense and very hard work. The injured person becomes part of the team and the common goal is to recover as much functionality as possible. But where does the spouse feature in all of this?
Certainly, she has a place in the physical recovery processes and she is meant to be an integral part of the training process. As with her spouse, she also has to learn how to cope with disability. But unlike her spouse, this is not her whole life. She still has a home to run and often a job to keep. She has to juggle her time between the needs of her injured spouse, her household responsibilities, her children and her job.
The process of rehabilitation carries on with or without her. She starts to feel like an intermittent onlooker rather than an integral part of the rehabilitation. She finds it difficult to share the pressures of work, the demands of children and the drain of household responsibilities and chores with her life partner – he who had always shared this with her, but is now absorbed into another world. She becomes lost in space…
Phase 3: To struggle for the injured partner and re-establish life as a couple
Finally, the day arrives. Discharge. Going home. All of a sudden both are faced with the realities of the situation. Normal activities become major obstacles. Small, unnoticed steps, a too narrow doorway, a blown ceiling light bulb that needs changing. The homes of friends are no longer accessible and entertaining in your own home falls squarely on the shoulders of the uninjured spouse.
Children need to adapt, authority is often shifted. Holiday planning takes on a whole new meaning. Then there are the mutually embarrassing issues around a neurogenic bladder and bowel that need to be managed. The brunt of it all falls on the able spouse…
Re-establishing a life together after one partner’s SCI is a long and troublesome process that couples have to manage by themselves. Two people, both in a deep existential crisis, are supposed to overcome challenges in their relationship, their circumstances and their emotions, which often are more than couples living a normal life could handle.
The challenge is to jointly focus on regaining independence – removing unnecessary dependencies – for the injured spouse. In this process, “Ag shame” does not cut it. Empathy is great, but there is no place for pity. It is a matter of being brave and bold. Discover abilities, define roles and fulfill roles as best you can.
Love each other deeply, support each other as fully as you can and place pity on a shelf to gather dust. Eventually you will both find your place in space again.
Ida’s Corner is a regular column by George Louw, who qualified as a medical doctor, but, due to a progressing spastic paralysis, he chose a career in health administration. The column is named after Ida Hlongwa, who worked as caregiver for Ari Seirlis for 20 years. Her charm, smile, commitment, quality care and sacrifice set the bar incredibly high for the caregiving fraternity.
email: georgelou@medscheme.co.za
