Life on Wheels (13 page)

This means that your connection to one of these centers could contribute to knowledge and understanding about disability, which the center will disseminate to others working to be of service to people with disabilities. Beyond participation in various kinds of research studies, there are increasing opportunities to participate in human clinical trials, should you fit the criteria that are always very clearly defined for such procedures.

There is not always time for you to make full adjustments before leaving rehab. States Dr. Michael Scott of Rancho Los Amigos:

Once you are out of rehab, how can you find out how much more progress is possible in gaining strength and skills? How do you make that progress on your own? This is the challenge of shorter stays.

Rich Patterson of the Santa Clara Valley spinal cord unit notes:

Your rehab experience might be unpleasant for you. You might resent the controlled environment or feel you just want a break from all the hard work. But the resources there exist for you, and it is a mistake not to take advantage of them while you have the precious opportunity. Don’t wait until you find out how limited you are by having stopped short of gaining your optimal strength and skills. Even people who hated rehab reconsider. Bonnie Sims says:

It is much harder to achieve your optimal level of function without the support and regulated schedule of a rehab facility. Nonetheless, take advantage of outpatient services your rehab center offers, find similar services nearby if you live too far from your inpatient center, or at the very least be sure that you have a home program designed for you when you leave rehab and do your best to stick with it. There is always more you can achieve. Once you are home, don’t let the rehab process stop. It’s only just begun, and the quality of life possible for you lies ahead—if you choose to remain on that path.

The question of what you will go home to comes up quickly once you arrive in rehab. There is a lot to do to get ready, so the process should begin as soon as possible.

The first question families have is usually about the adaptation of their home. As discussed in Chapter 7, Home Access, this may not be a simple matter of adding a ramp or putting in grab bars. Contractors may need to get involved, doors might need to be widened, lifts installed, or full additions built onto the house. Some people find they must leave their existing homes and find another more accessible place to live. These things take time—and money.

Equipment is another key to the discharge process, but the task of identifying a wheelchair is difficult to accomplish early in the rehab process. As Bonnie Sims explains:

Many major rehab centers have special apartments designed as transitional living locations, but most insurers will not pay for a stay at such a facility.

You want to create an environment for yourself that helps you continue coping. The choice of people you interact with makes a big difference.

Your relationships will change with some people. A disability has a way of flushing out relationships, of showing who is really committed to you as a true friend or even a family member, and who is unwilling or unable to accept you on new terms. There is both heartbreak and joy in this. You will find a deeper connection with some people in your life, and you will be disappointed in others, facing the loss of their presence because they are unable—perhaps only for now—to face their fears raised by your disability:

You will also meet new people and develop friendships in ways you might not expect. You have control of who you interact with and in what ways. You have new priorities for maintaining your health and redefining an active, satisfying, and meaningful life. You have to choose how you need and want to live, give people you’ve known the chance to understand your new terms, and try to have enough people in your life who inspire you and support you.

Relationships take work. Expressing emotions to each other is part of the process of deepening your connection. Even if others grieve about your disability or tire of the caregiver role, keep communication open. The relationship can grow, so long as people are expressing themselves.

In her book,
Coping with Limb Loss
,
⁶
Ellen Winchell, PhD, describes aspects of a successful support system:

Our lives are enriched by emotionally nourishing relationships.

We are innately social beings who turn to each other in times of need.

Knowing people love and care about you reduces your sense of isolation and the burden of the experience.

One “best friend” is not a complete support system, but is an overwhelming responsibility for that person.

You are not a burden to people who care enough to want to contribute and will find meaning for themselves by doing so.

Accepting support is not a matter of shame—everyone needs support in some way at some time in their lives.

By speeding the date of discharge, insurers have placed more responsibility for care on families. Coverage for home nursing and personal assistance is also limited, so families end up carrying much of the load. For a person with quadriplegia who is ventilator dependent and must have someone nearby at all times, this is a large task indeed.

According to a June 1998 article in the
San Francisco Examiner
:

Some families have a great deal of trouble with the caregiver role. It is, at the least, a financial strain. Often at least one family member must leave a paying job to perform a caregiver role that produces no income. Caregivers take on medical responsibilities, such as assistance with a bowel program or suctioning secretions for a ventilator user, but might not have received sufficient training. They might have an emotionally difficult time performing such intimate and invasive tasks.