Accepting New Help
The world we live in - and we
ourselves - place a very high value on physical independence. We're
raised on the expectation that we will ultimately take care of
ourselves. As toddlers, we learn to dress and feed ourselves, as teens
we learn to drive and to think for ourselves and finally, as adults, we
assume responsibility for our lives. Hallelujah, we've finally grown up.
Add Spinal Cord Injury...
Then, somewhere in there spinal cord injury arrives and everything gets
turned around. Many survivors have to hand back a large measure of
control - to hospital staff, caregivers, parents and even government.
Some fight a sense of being returned to childhood, and most have to deal
with the concept of living on the edge - of being independent now, but
only a breath, a fall, a skin sore away from losing a big hunk of that
independence. What if you injure one of your shoulders and can no longer
do transfers? What if you lose the manual dexterity for bladder care or
the range of motion for dressing, or maybe just the energy to keep up
with household tasks?
...And Aging too...
Add aging to the mix. What then? Even those who aren't disabled
eventually come to realize that as the years go by, the buffer that
separates independence from dependence grows progressively thinner and
thinner. If we live long enough, we all eventually become dependent, for
a greater or lesser period of time. With a spinal cord injury, that
realization comes early. You don't have to add many years to your injury
to become painfully aware that your independence is fragile, that at
some point, the only thing that will stand between you and an impossible
living situation is the help of another person. Yet you fought a long,
valiant battle to win your independence after injury, and you'll do
anything to preserve it. Any compromise seems like fundamental failure.
For most survivors, weaned on the holy grail of self-sufficiency, that's
a terrible dilemma. The dilemma doesn't go away. But it may not be so
terrible, either.
The Facts:
Like it or not, the need for help is as much a part of the spinal
cord injury picture as wheelchairs. About 40 to 45 percent of SCI
survivors use some kind of personal assistance, and the percentage
increases with age. The British Longitudinal SCI Aging Study of
survivors injured 20 or more years found that 22 percent had an increase
in the amount of assistance they needed - regardless of how much help
they did or didn't need initially. Why? One-fourth of this 22 percent
blamed fatigue or weakness; another fourth blamed some other medical
condition. Weight gain was another major cause. The areas they needed
more help with tended to be with transfers if they were paras, and
mobility in general if they were quads. Other problematic areas:
dressing, toileting, homemaking and eating.
The Mindset:
So, given the weight society places on independence, how do you deal
with the prospect of more dependence?
The key is mindset. Try thinking about what determines your self-worth
and quality of life: do you have to be able to do everything yourself,
or is it enough to know that you can get the job done? Realize that you
alone are responsible for that determination.
Consider two people:
-Gary is a 20 year old college student with quadriplegia. Each
morning his alarm wakes him at 4:00 a.m. He then spends over three hours
getting ready for his first class. He seldom has time for breakfast.
-Jon is another quadriplegic student. He sleeps in until 7:00 - when the
personal care assistant he hired and trained arrives. Thirty minutes
later he is up, washed and dressed. His bed is made and he is on his way
to the cafeteria for breakfast.
To a large extent, Gary's self-esteem comes from his fiercely held
physical independence. He likes knowing that no help is needed.
But Jon knows that, regardless of who does each task, he, Jon, has
complete control. He also has the freedom to spend the time and energy
he once used for self care on activities that are more important to him.
The Source of Esteem:
Self-esteem and accepting help may not be so incompatible after all.
For most of us, as we get older, knowing we have the control and the
resources to get things done becomes progressively more important than
doing everything ourselves. We learn to interact with our environment by
consuming services, and think little of it. Most of us are comfortable
with not being able to replace the transmission in our cars; we can hire
a mechanic for that. Most of us don't raise our own food, haul water or
produce fuel to heat our houses either - we hire those things out, and
we don't lose too much sleep over it.
What Comes First?
If personal care services are looked at in much the same way,
perhaps you can hire out that early morning dressing routine, that tub
transfer or whatever it is that impedes getting on with the day - and
spend your energy on your education, career or serving your community
instead.
The point: hang on to the
activities that really matter to you, and delegate or negotiate away the
ones that don't.
For example:
