Have you ever wondered how people react to the news that an amputation is required, or how they cope with the functional disabilities that may result?
Have you maybe wondered whether psychiatric problems (such as depression and posttraumatic stress disorder [PTSD]) are predictable or common after amputations?
Have you maybe thought about how amputees adapt (or don’t) to physical rehabilitation as they regain a level of mobility? Have you ever thought about the supporting families, how they might consider and act; assistance they also require, the changes in theír lives?
And have you even considered the stigma surrounding “disabled”, and how society seldom (if ever) caters for, often shuns; those with less than perfect health or mobility?
Above are only some of the issues amputees have to confront in the aftermath of amputation.
Early December 2015, my own life drastically changed when I was trapped between 2 vehicles, after a driver lost control over his vehicle and crashed into the vehicle behind which I was standing. I spend 5 weeks in hospital during which the doctors attempted to save my life and leg, undergoing constant procedures to stop a spreading bone infection, undergoing skin graphs and muscle transplant/s. Seven procedures later I still lost my leg.
Before this, I was also one of the general population who adverted my eyes from those in wheel chairs, or from those who “bumbled” around on prosthesis. Little did I know, or even admired; the strength these people actually require to continue functioning in their own lives and in Society.
Elizabeth Kubler-Ross provides five stages of grief (to divorce, death, other) that are well known to most mental health providers. They are:
- Denial and isolation: “I can’t believe this is happening.” Denial in this case is usually experienced by people who go through traumatic amputations i.e. when it was not your fault.
- Anger: “Why me?” “How could God allow this?” Being only human, we naturally tend to assign blame and vent anger towards someone, regularly God if we are spiritual. Often we tend to blame loved ones (i.e. they did not protect us) and even ourselves.
- Bargaining: “If I do this, will I get well?” We may attempt to postpone the reality of amputation, and most will try to bargain with the medical professionals or through a higher authority such as a religious figure.
- Depression: “What’s the use? My life is over. What do I have to live for?” This is not clinical depression. It’s a normal reaction, one which we need to work through. Common symptoms include sleeping either too much or too little, negative feelings about the environment and the future, feelings of hopelessness, crying often, and talking or thinking about death. Depression is not a sign of weakness, however, and should not be seen as such (not to be confused with idealisation of death).
- Acceptance and Hope: “Nothing I can do about it, may as well make the best of it.” This is the stage where we start moving forward, and working towards a new life.
It is simply logical for any amputee to go through all the above stages. There and back again. A visit to Oz and up and down Dorothy's Rabbit hole.
Unfortunately we all, too often, forget that amputation is not only a physical loss, it is also a psychological loss, or “a death”. While common perception on the street, is, “simply get a prosthesis, what’s so difficult about that?”
Amputees lose not only a limb/s, but also mourn the loss (death) of a previous life with all its relationships as we knew it…We lose dreams. We lose independence, self-esteem, too often we also have to change our world views or perception of life as we understand it (i.e. the world is a safe place versus nowhere is safe, Bad things only happen to bad people, etc).
We may become scared of the future. We become scared of losing even more than “only” a limb or more. We don’t know where to find safety, again (In South Africa, we even become scared of being killed with our own prosthesis!)
Often we become paranoid i.e. the sudden blue or purple dot on the stump means a blood clot. What about a following/next amputation? What happens if we are one of those who can never walk with a prosthesis? What about Osteoporosis? What about resultant hip replacements? Where do we find the monies required to sustain all this?
Some of us also struggle with spiritual issues during this process, while others again, becōme spiritual. If our self-esteem was linked to our physical appearance, a negative self-view regularly occurs.
Who experiences what and in what intensity, also depends on the individual.
The psychological meanings assigned to amputation, reflect and depend on the individual and his/her life experiences.
A previously bed-bound person who requires an amputation is likely to experience amputation differently from an elite athlete; amputation can be experienced as an absolute loss or as a challenge. The ability to cope with an amputation will also be affected by pain, level of disability, cultural issues, social issues, presence of social support, personal relationships, the reactions of caregivers and other loved ones, financial issues, and a person's pre-amputation coping style.
Some people have a natural resilience to trauma. They tend to have more adaptive coping styles. Others, especially those who tend towards depression and anxiety (those who struggle with unhelpful thinking patterns in terms of Beck and Ellis’ cognitive thinking patterns) may struggle more.
While lying in my hospital bed, all I me myself could think about was “Will I ever be able to run again with my dogs? Will I still be able to play with my pet duck without clumping him to death with a crutch or my prosthesis? Who is going to change the light bulbs?”
At which stage, I entertained very simple desires. Never mind Work or other necessary survival – I simply wanted to cope with home environment. Especially. Once I finally returned home, I also was increasingly confronted with so many things I couldn’t do anymore and never even thought about – not to mention the functions my life partner increasingly had to take over.
So many things I decided I would do again, someday soon. My list of Activities I want to do again, is constantly increasing. As I progress, small steps by steps; I am developing new dreams for both myself and also my partner (Obviously with his co-operation).
I will “chef” again. One day I will be able to change my own light bulbs. I will run again. I will dance again. And so much more! I find solace in short term goals, small steps… instead of long term goals which might seem unapproachable right now, I rather focus on all the small steps which would total in the larger picture.
The stages of grief, however, does not even remotely, describe what amputees go through on other levels.
Similar to the man on the street, I never knew that using a prosthesis, would require actual learning to walk again (I actually thought walking is a natural ability).
How to walk uphill, downhill, how to climb stairs, how to walk on and through uneven surfaces (i.e. lawn) how to walk in small or narrow spaces, how to sit, how to get up (especially from the floor) sit down, travel long distances, and so much more.
I never knew that it would accompany a constant level of pain, or having to learn to live with pain levels. I also never knew that the stump would atrophy and that a lot! of adjustments and different prosthesis would be required until the stump eventually stabilise (after a couple of years). And even then, I might never be free of pain, whether it be phantom pains or other.
To an extent, I find physical rehabilitation (prosthesis) almost similar to Dante’s 9 circles of Hell. With the exception, after walking through the circles of Hell here you might find retrieve to an extent.
I am not going to provide a summary of Dante’s Inferno, you are more than welcome to read and draw you your own references. Should you also be academically/intellectually inclined.
I might mention though,
Sloth, in particular, seems to be a real danger to physical rehabilitation especially. It’s so easy to simply let go and let others… So easy to sit in the wheel chair and let others do whatever they do… To Do Nothing Ourselves…
But until a next Blog, let’s leave it at that?
http.icexpress.co.za. Amputees: stand tall and proud. Walk with with Grace.