One Step at a Time
Betsy and I have developed the following Program to help others who have suffered a Spinal Cord Injury. As you can see from the steps, the sooner you begin to work on yourself, your injury and your situation, the better the results.
Become knowledgeable about all the research and breakthrough techniques that are currently in trial. Ask for any new medications, steroids, hyperbaric chamber exposure, healers, etc., that could possibly help your SCI injury. If you are able to travel, you may want to consider seeking treatment in Israel, Belgium or China, where experimental work is being performed. Usually these techniques are best administered in the first few days after injury. I cannot personally recommend any particular procedure because I have not witnessed any of these breakthroughs, but many seem quite promising. Even astonishing. In my opinion, they are about to happen.
Please take a look at the recommended web sites in our resource section. I particularly recommend www.sci-info-pages.com. You may also want to look at http://www.scirecovery.com/. The Christopher and Dana Reeve Paralysis Research Center has a particularly informative Research Guide available by request on www.paralysis.org. You can also call them directly at (800) 539-7309.
Understand and deal with your frame of mind. Depression and shock must be dealt with as soon as possible. Through your research you will see that today there are more cases of people who do recover. It is also clear that a cure for paralysis is on the immediate horizon. These facts offer immediate hope. Ask for a knowledgeable counselor to work with while you are in to the hospital. Treat depression with counsel and prescribed medication. BE VERY CAREFUL ABOUT MEDICATION! YOU ARE AN INJURED ATHLETE ON THE ROAD TO RECOVERY! Universally, everyone that has had an injury like yours and possibly even more serious than yours, is better off today than they were when they were initially injured. So take heart in the knowledge that you will get better. A LOT BETTER!
Put different people in charge of different issues:
- Payment - deal with insurance and coverage issues. Make your insurance caseworker part of your team. Bring them in and let them understand your pain, concerns and need for help. If you have no insurance speak to your hospital caseworker, different states have various programs that can help.
- Researcher - someone must study and document the web information and other resource material on Spinal Cord Injuries. An excellent place to start is http://www.spinalcord.org/index.php. Make a loose-leaf notebook and keep records of all research and articles.
- Research - understand and research all of the medication you are given. Many side effects are not worth the risk of taking these medications.
- Roles - try to define roles in the family and your support team. Your spouse should not be your nurse or professional care giver; this can quickly jeopardize your relationship. If financially possible hire a caregiver (see 6 below) and shift responsibility that you once commanded to others in an orderly fashion.
- Hire a Coach that will take over your rehabilitation program when you finish your out patient care. Get involved in established programs that are currently in existence i.e. Project Walk, that you can participate in.
Reevaluate your living environment when you leave the hospital so you can function as easily as possible. Be careful about overdoing it or making too many changes too soon. I made the mistake of moving from our beautiful home which was three stories. I should have considered:
- Installing an elevator.
- That I may recover enough to walk up stairs.
- That we could have reconfigured the house so that I could live on the first floor.
Talk to others and get ideas don't limit yourselves to the most expeditious remedy, sometimes the best plan is to defer making decisions for a while. Web sites to investigate with good information are:
You are facing a new financial challenge. What can you do? How, when and with whom? Look at your life insurance policies and see if you can take advantage of a disability clause for monthly income. Check to see if you qualify for disability benefits on your mortgage, telephone service, utilities, government housing, etc. You can apply for financial assistance through local service organizations that offer assistance (Lion's Club, Rotary Club, etc). If your injury was the result of an accident and you were not at fault, hire a personal injury attorney to represent you in a law suit. This is the time to collect what you deserve as the cost of a debilitating accident is much more than one can imagine. Consider starting a non-profit organization which can be managed by family or friends to raise money for your rehabilitation and living expense. If you had a job and can not continue to do it, ask the Company if there is another job that can be performed by you. You still have a lot to contribute, and your company can still benefit from your previous experience. I must interject here, that education should be set as a priority, if you have not completed high school, DO SO! If you can go to a college, DO SO!
Find a qualified caregiver. This may be the most important step, depending on your level of injury. A caregiver can be someone who comes in for an hour or two a day or someone who lives in. In either case, and certainly in the latter, you should find someone compatible as well as knowledgeable. There are agencies who can find caregivers for you, but they charge extra. What I have found is that the best caregivers are usually found by referral. You may want to call the local VA system. If they have a SCI unit, ask if they can refer someone (our local VA trains caregivers).
Around the time that your hospitalization comes to an end, start to re-analyze your injury. Where are you strongest? Are you affected on one side more than the other? What about sensation? What things do you recognize as the things you want to get back first, like brushing your hair and teeth by yourself? Set goals in relationship to the degree of the best return. Personally, I didn't prioritize getting my hands back, but a friend with the same injury did. He worked to bring his hands back by playing the guitar for hours on end. Today, his hands are almost normal. Mine are not, so I now work harder on those small muscles, trying to strengthen and bring them back. By no means should you ever think, "this is as good as I am going to get." Recovery continues for years. You may plateau, you may slow down, but you will continue to heel!
Get back into life's fun sports. www.dsusa.org/ Try tennis, skiing, cycling, basketball, rugby, swimming, surfing and anything else you can think of. In many communities there are centers that organize disabled sports teams. Special equipment is made that can bring your favorite sport back to you. Here again the internet can be your best source of information. Most spinal cord injuries are sustained by younger people who are out in the community creating and finding diversions. You will be able to compete.
Independence is important to both the injured person and the spouse, partner and family. Clearly I would be wrong to say that dependent people don't have full lives. But how much independence will be possible is going to be a function of ability and desire. I can only state that it is paramount to strive for the maximum amount of independence. Fortunately there are a multitude of tools and instruments that facilitate this. For example, one of the first things to do is to get back behind the wheel and drive. There is information available and specialists who can help you choose the right car and driving controls for your injury. It's also critically important to choose the wheelchair that's right for you. It should be one that enables you to grow and one that can change with you as you increase your motion and reconnection process.
Making sense of it all - finding a purpose and reason for your journey. Making sense of it all will help open you up to all possibilities. Re-evaluate your potential and life goals. Find your passion again and share it. Visit a recently injured SCI person and share your hope and knowledge. Keep a journal, a record of your daily efforts and recovery progress. Take pictures and start thinking of how you can give back. There are 30 people injured daily in the USA, so someone needs you to stand firm, to tell them that you could, how you did and where your are today. It all comes in a package called "hope" for the newly injured.
While waiting for a cure, we are fighting for those who are injured now. We are getting them ready, prepared for the cure, so no one will fall through the cracks. You can't wait for the cure, you have to act now. There are no final answers. Take the journey from Catastrophe to Conquest.