VOLUME 3 NO. 6
December, 2002
Amputee Coalition - National Limb Loss Information Center
900 E. Hill Avenue, Suite 205, Knoxville, TN 37915 · 888-AMP-KNOW (267-5669)
Richard Mooney, editor; e-mail: matlmgr@jps.net - Becky Bruce, coordinator; e-mail: rbruce@amputee-coalition.org
. . . Dedicated to Enhancing Support Group Leadership Skills
Leadership Skills
Let's Talk....and Listen
by Deborah Shuck, MA
As support group leaders--and many of you are probably also peer visitors--you are chiefly concerned with providing support and encouragement to a number individuals who are still trying to come to terms with their limb loss. Most of you are experienced amputees, so you are in an ideal position to share your experiences and "educate" your members in the ways of living with limb loss. This takes a lot of talking and a lot of listening. But listening is where it can all go wrong.
According to The Dynamics of Human Communication: A Laboratory Approach, by Gail E. Myers and Michele T. Myers, there are two types of listening: deliberative listening where you hear only the content of the message, and empathetic listening where you understand the feelings behind what is being said as well as the content. Why is empathetic listening important? Often, what people are willing to tell us--at least early on--is just the tip of the iceberg. Deliberative listening gets that message pretty easily. But usually there is an important, hidden, and sometimes complicated, subtext of feelings and emotions that may be more critical for us to understand than the mere content. If we don't listen empathetically, we will never get to those more complicated levels.
An obvious example might be when someone says to us, "Sometimes I feel like I just can't go on." A listener who is conditioned to focus only on the content might insensitively respond, "Don't be silly. Things will get better with time." This is a problem-solving statement that not only ignores the person's feelings but forecloses any further discussion. On the other hand, an informed listener will quickly recognize that there is probably a lot of pain behind such a statement and might respond, "You sound like you're really hurting." They will encourage the person to open up and talk about what is troubling them, employing open ended questions, reflective statements, and judiciously used periods of silence until they are pretty sure they understand as much as possible how the other person feels. Empathetic listening enables us to get inside the other person's head, to understand their emotion, to feel what they feel.
If you doubt the value of empathetic listening, think for a moment about some of the interactions you have had with members of your own healthcare team. Reverse the roles. Now you are the new amputee and the healthcare professional is the support group leader.
How many times has a physician asked you how you felt and then not listened to your answer? Did you ever say, "I've been better," and watched the physician blow right by that to something she wants to tell you? How many times have you left the doctor's office and felt that you weren't able to explain it all and were no better off than when you walked in? Do you remember the good old days when time didn't seem such an important issue for physicians--when doctors allowed more than seven minutes for an office visit and didn't rush you in and out? If these examples resonate with you, you can understand how unfulfilling it is to be shut off by deliberative listening and what a joy it is to sit across from someone who understands empathetic listening and wants to take the time to understand how you feel. As a support group leader, which practitioner do you want to be like?
Here are some ideas to help you become a better listener.
Also take the opportunity to summarize frequently. An example is, "Okay. What you've said so far is . . ." This is especially important in information-rich communications.
Remember, hearing and listening are not the same. Hearing is a natural phenomenon but listening is not. Hearing is a physiological process but listening involves thinking and, sometimes, hard work. We are born with the ability to hear, but listening must be learned. If you believe otherwise it will be detrimental to your learning process. You will never learn what you believe you already know.
Deborah Shuck has a Master's Degree focusing in Human Relations and Marketing.
Peer Visitation Corner
Peer Visitation Q and A Forum
by Kathy Spozio
Dear Kathy,
On more than one occasion while performing a peer visit I've been asked to recommend a prosthetist, or to tell who my prosthetist is and how I feel about the services I've received. I find this to be a very awkward question to answer. Does Amputee Coalition have any guidelines for handling a situation like this?
Judy
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Dear Judy,
These questions aren't uncommon ones for peer visitors to be asked. They make many others uncomfortable too. The rule of thumb is, neither question should be answered directly. Instead of recommending a prosthetist, you should recommend a method they can use to find one for themselves. Instead of telling who your prosthetist is and saying whether you are satisfied with the services you are receiving, you should point out that prosthetic services are intensely personal and that your own experience may not apply much to their unique situation.
As a peer visitor representing the Amputee Coalition (or, for that matter, representing your own support group) it's important to remain as neutral as possible when asked about recommending a prosthetist--or any other medical professional, for that matter. Of course, it's only human nature that the visitee will be interested in knowing about your prosthesis and who made it. The Amputee Coalition realizes that there are some questions that can't go unanswered and this is one of them, but a direct answer isn't the best one.
In this instance it's suggested that you do not recommend any particular prosthetist; however, this is the perfect opportunity to offer the new amputee a list of several certified prosthetists in the area. Such a list is often compiled by the local support group or can be attained by contacting the Amputee Coalition. It's important to point out that each amputee has different needs and that each prosthetist has different strengths and weaknesses. As the article from the Amputee Resource Center referenced below so well conveys (and this is something you can diplomatically emphasize to the new amputee), "The important thing to remember when selecting a prosthetist is that you are the consumer and that you must research what's on the market just as you would when making any other important and expensive purchase." If you adopt this position, I believe, you will be less uncomfortable responding and better positioned to offer your assistance as well as that of your local support group and/or the Amputee Coalition.
The Amputee Coalition has published materials that will assist you in helping the new amputee determine how to choose a prosthetist. One resource from the Peer Visitors Resource Section involves Frequently Asked Questions About Prosthetics and Prosthetists, and is reproduced below. It's being used as part of the new certification program for training peer visitors that was recently initiated by the Amputee Coalition. You can use it as a personal peer visitation resource, as well as distribute it as a resource for your support group's peer visitors. It addresses questions like:
A second Amputee Coalition resource that will assist you in answering questions along this line is an article titled "Choosing a Prosthetist," authored by Wendy Beattie, CPO, FAAOP. It can be found in the 2001 issue of First Step magazine and also on the Amputee Coalition Web site at: http://www.amputee-coalition.org/first_step/firststepv2_s2a02.html
A third useful resource, called "How To Select a Prosthetist," although not published by Amputee Coalition, can be found at the Amputee Resource Center (ARC) which is part of the Western Amputee Support Alliance (WASA) Web site. Dick Mooney, editor of the Communicator, authored this article. It can be found at: http://www.usinter.net/wasa/contents9g.html
(Those who are reading this in hard copy because they don't have Internet access, can obtain copies of these documents by calling the Amputee Coalition.)
Thanks, Judy, for bringing this issue to light. I hope this information will help you and other visitors handle this sometimes difficult circumstance well.Frequently Asked Questions About Prosthetics and Prosthetists
Prosthetics:
What do I need to do to get ready for a prosthesis?
There is much you can and must do to get ready to use a prosthesis and use it well. The top priorities are:
When will I get a prosthesis?
Generally a few weeks after surgery, when the wound has healed and the tissue swelling has decreased, you will be ready for prosthetic measurements and fitting. This process can be hastened with exercise to increase strength, and the use of a shrinker to help shape the residual limb and decrease sensitivity.
What does a prosthesis look like? How will it stay on?
Depending on the level of your amputation, physical ability, functional needs and personal preference in the appearance of the device, a prosthetic limb is designed using a variety of different components which are attached to a socket that fits over your remaining limb.
How does a prosthesis work? Will I be able to do all the things I did before I lost my limb?
The majority of people who lose a limb can get back to normal within several months. How well they function depends primarily on their goals along with timely, comfortable prosthetic fitting, good follow up care and a "can do" attitude from the patient, as well as the professionals.
Is it easy to learn to use a prosthesis?
Learning to use a prosthesis is a tough job. It takes time, great effort, strength, patience and perseverance. You will do best by working with a therapist to learn how to handle the new device. You will need guidance on how to.
Can the limb break down?
Yes, things can happen which will require repair or replacement. It's a good idea to know about warranties and what to expect from the person who makes your prosthesis. Get small problems with your prosthesis taken care of promptly. There is no benefit to waiting until something falls apart or causes you skin breakdown or pain. If you wait too long for repairs or replacement, you can do serious harm to your residual limb and other parts of your body.
Strain on other muscles, especially in your back and shoulders will affect posture, in addition to performance of the device and energy needed to use it. Early prevention is more valuable than long-term treatment for problems.
Prosthetists:
What do I need to know before I choose a prosthetist?
First and foremost, it is a good idea to identify your needs. You can discuss your options with your physician, therapist or other specialists. Decide what is most important to you in terms of your lifestyle and activities prior to your limb loss and if you wish to return to those activities following your recovery, such as your vocation, leisure activities, hobbies, recreational interests, etc.
How do I locate services?
You can request a listing of certified practitioners from the Amputee Coalition, your rehab team, a local amputee support group (if one is available) or your peer visitor.
What should I take into consideration when choosing a facility and prosthetist?
The relationship you develop with your prosthetist and the facility they are employed by is very important. It is important to choose a prosthetic office that is convenient for you to frequent. There will be multiple visits necessary during the manufacturing process and later for routine adjustments and maintenance. Your initial impressions and instincts about whether you can work successfully with a professional or facility are important. It will require open, honest communication and a willingness to problem solve together. There are many factors to consider:
What questions should I ask when I meet with the prosthetist?
Rapport and communication are paramount. It is most important that the first meeting with the prosthetist be informative. In meeting the prosthetist, you should note whether he/she showed interest in your concerns. Does he/she listen and try to address your concerns honestly? The patient must ask every question that comes to mind and express every concern or fear. If you are not treated as part of the team now, don't expect your needs to be addressed later.
Ask to meet the practitioner who will be fitting your prosthesis.
Final Note:
A prosthesis is an artificial limb. It will not totally replace every quality and function of the one you lost. If anyone tells you it will, or if you expect it to, then you will be very disappointed! What you need to seek is a knowledgeable, competent practitioner who is sensitive to your needs, lifestyle and priorities. Together, you can work as a team to find the correct balance of function, cosmesis and comfort required. Together, you will meet challenges as you become more active and demanding in your use of the device. In the end, you will grow and solve problems together by applying new information and technology as it is available.
Be realistic about your expectations. Also, be patient with yourself and your team. Progress will be measured inch by inch and you must learn to walk before you can run. There are no miracles--only people who persist in seeking and working toward a goal.If other support group leaders or peer visitation coordinators have information, advice and/or questions to share, please forward them by email directly to Kathy Spozio at mermaid@usachoice.net.
Leadership Skills
How To Delegate Effectively
by Dick Mooney
Even in the smallest of support groups there is a lot of work to be done. In larger groups, there is more work to be done than any one person can do. Typically, there are tasks related to governance, finances, membership building and relations, arranging meetings and speakers, conducting a peer visitation program, staging special events, and publishing a newsletter or Web page. If you want to view a surprisingly long list of jobs that need to be done at most mature groups, go to http://www.usinter.net/wasa/guidec2.html>.
Many support group leaders complain that they have to do everything themselves because it's just too difficult to find others to whom they can delegate part of the load and rely on to perform well. In my experience, part of the problem these leaders complain about is caused by poor delegating skills. This article will address the "right" way to delegate.
Simply put, the objective of delegation is not only to get the job done by someone else, but also to develop competent team members. The best of all things is that team members will eventually know everything the leader knows and will be able to share or take over the leadership role when necessary. Delegating the simple tasks of following instructions and completing assigned work won't do the trick. Through effective delegating, leaders teach team members to accept responsibility, to think, to make decisions, and to assure that desired results are attained independently of the delegator.
Know your people's interests and capabilities - One of the best ways to demotivate team members and ultimately lose their participation altogether is to delegate to them tasks for which they have neither an interest nor the qualifications needed to perform well. If you don't understand your people's strengths, weaknesses, skills, and ambitions you will not be able to make effective matches between jobs and people. Mismatches invite failure, and no one benefits from failure.
Delegate the result, not the process - Assign the task, not the method to accomplish it. Define the desired outcome. Then let the person complete the task in the manner they choose as long as the results are as you have specified. If you tell someone to do the dishes you lose the ability to complain if the stove isn't clean. A much more effective assignment would be based on the result you really want, i.e., to keep the kitchen clean.
Whenever possible, delegate the whole job to one person - There is nothing as demoralizing as being responsible for only a fragment of a project and never being able to feel a full measure of pride when the job is done successfully. When it is determined that a job is too large to assign to one person, such as the production of a newsletter that requires more than one writer, desktop publishing, the sale of advertising, and time consuming printing and mailing operations, is to create a team with the editor as the team leader. Then the team can be rewarded for a job well done. (See the article, "How to Get People to Work Together," elsewhere in this issue.)
Provide enough information - One of the most common reasons delegation fails is that the leader does not take the time and energy necessary to provide complete information team members need to guide their performance. Take something potentially complicated like a newsletter. In delegating the authority and responsibility to publish a newsletter, the leader and the editor must develop a common mental image of precisely what qualities a successful newsletter will have. This is easy to say but difficult to accomplish. Publication of a newsletter touches almost every aspect of a group's existence. What to write about is affected by the group's overall mission and what the members like to read. There will be printing and mailing costs that must be in harmony with the group's finances. Even the definition of "professional look" will require lots of discussion. Ultimately, this is the kind of delegated task that will require the free flow of information between the editor and all members of the group's management team.
As a practical matter, there will ultimately be several people performing delegated tasks simultaneously and many of these tasks will require coordination with others. This argues for having regular staff meetings (or Board meetings if the Board members are also working on delegated tasks) to give and receive the information needed to keep everything on track.
Stand ready to help but don't take the job back - Whoever says if you want a job done right do it yourself needs to go to delegating school. A leader must stand by to help team members over the rough spots, especially when the leader has knowledge and experience doing the job and when the team member asks for help. But the leader must do everything possible to avoid taking the job back. Remember, if you're not willing to live with a few mistakes here and there, your team members will never develop the experience and skill to stand on their own.
Maintain management control but don't nag - Management control is simply defined as comparing what is with what should be and taking corrective action when the two are not in sync. When a leader delegates, he or she actually transfers the authority and responsibility necessary to do the job to the team member. The important thing to remember, however, is that the leader still retains full responsibility and authority. In computer terms, it's like copying authority and responsibility, not cutting it from the leader and pasting it on the team member. Since the leader cannot avoid responsibility, he or she cannot avoid maintaining management control either.
There is a thin line between maintaining management control and nagging. Hovering over the team member's shoulder or constantly saying, "Is it done yet?" are clearly nagging. The best way to avoid nagging is for the leader and team member to agree up front when is a good time for the team member to report on progress.
What jobs should be delegated? - In general any job that isn't assigned to a specific officer by the bylaws is a candidate for delegation. Remember, every time you do a job that can be done by someone else, you do so at the expense of a job only you can do.
Break up big jobs - The key to delegating large, complex jobs or jobs which have never been done before (and, therefore, neither the leader nor the team member knows how to do them) is to delegate gradually. If you present someone with a task which is daunting, one with which that person doesn't feel able to cope, then the task will not be done, you will be frustrated and the team member will become demotivated. Instead, build-up gradually. First assign a small task leading to a little progress and then add another small task which builds upon the first. When that is achieved, add another stage; and so on.
Evaluate and reward good performance - Leaders should constantly evaluate the performance of team members on delegated jobs, making suggestions and providing support when necessary, and giving both private and public praise when jobs are done well.
Leadership Skills
How to Get People to Work Together
by Dick Mooney
Many amputee support groups--usually all except the very small ones--have more than one person in leadership positions. There is a head person who may hold the title leader, president, chair of the board, or the like; and there are others who may be called officers, board of directors, board of trustees, or something similar. These individuals divide the labor in some fashion, either formally or informally; they meet periodically; and they are responsible for the group's progress toward meeting its goals--and sometimes, unfortunately, for the lack of progress.
For those readers whose groups are configured this way, I ask the following rhetorical questions:
The premise of this article is that 1), typically, the answers are not "yes," 2) things would be better for your groups if the answers were "yes," and 3) support group leaders need to think more in terms of teams than boards. My own experience is that many leadership groups tend not to be cohesive unless the leader takes affirmative action to employ team building techniques to change both the viewpoint and behavior of the group members. It's also my experience that team building can be difficult and time consuming, but the rewards can repay the effort many times over.
Teamwork can be defined as work done by a number of associates, each knowing enough about the parts played by the others so they can do their own parts effectively, subordinating personal prominence to the efficiency of the whole. It's kind of a long definition, but it tells us a lot. It has within it the keys to successful team relationships in everything we and our people undertake.
It tells us that good team players are content to do their parts. Implied in this statement is the fact that others are doing their parts concurrently, and that the parts must interact cooperatively to attain the common objective. It tells us that each member of the team must know what the others are doing, or cooperative interaction won't work. It tells us that personal prominence is subordinate to the team. Whether the job is blocking or carrying the ball, all must do the best they can without regard to personal heroics. It tells us that the objective of teamwork is the efficiency of the whole. At the same time it implies that the value of the whole produced by a smooth-working team is greater than the sum of the parts.
Probably the largest team in the world--and to my way of thinking, the most successful--is the symphony orchestra. On that team there are 80 to 100 members who, in the better orchestras at least, are all selected for their high level of competence. There is one leader (the conductor) and no one questions that person's authority to lead. Interestingly enough, the conductor plays the largest instrument in the world but is not allowed to control the instrument by touching it as can an organist, for example. The instrument is controlled not by touch, threat, persuasion, or intimidation but by everyone's devotion to a common goal--to make beautiful music. Each team member plays off the same music and the sole goal of the leader and each and every team member is to faithfully serve the interests of the music and their customers--the audience. Personal agendas are not allowed to interfere. The music and the performance are the only agenda items. Team members who cannot buy into the team's culture, those who do not perform well, those who are disruptive, or those who otherwise don't contribute to the team's common goal are soon replaced. And the team prospers.
I'll bet you never thought you would see a symphony orchestra proposed as a prototype for your support group's leadership, but read through the previous paragraph again and let me know if you aren't convinced that support group boards should be more like symphony orchestras.
Teamwork can cure a multitude of ills. Teamwork builds trust and confidence in the capabilities of the other team members. It eliminates uncertainty regarding the motives of the others. Empathy within the team often develops almost extrasensory ties between team members to the point that cooperative actions become automatic.
Meaningful work and worthy purposes bring teams together. Commonly understood goals give teams direction. When the work is important and the goals are urgent, they transcend personal animosity and petty bickering. Such irritants seem to disappear in the face of the team's concerted efforts.
If I've defined teamwork correctly, then my definition suggests a number of things we can do to help get our support group's leadership people to work more effectively together.
1. Pay particular attention to what the group is called - What's in a name? Sometimes the name helps shape the group's self-concept. Why not abandon board or trustees? Why not call it the management team or the leadership team? Inclusion of the word team will be symbolic, if nothing else, of the way you would like them to see themselves and to behave.
2. Stress team goals when assigning work - When assigning group work (e.g., meeting hosting, financial management, peer visitation management, newsletter production, etc.) call the group together and stress what the group, as a whole, needs to get done. In these discussions, always stress the support group's overall mission. If a formal mission statement doesn't exist, start there to work with the team to develop and agree on a mission statement. The critical challenge is to gain common understanding of the goal. Write the goal down. Draw pictures. Use the blackboard. Encourage the group to ask questions and reflect their understanding of what is to be done. Use every means at your command to make sure everyone really understands Finish by discussing ways members of the group can help each other and stressing the need for cooperation.
3. Make goal setting a joint effort - Step 2 becomes even more powerful if we involve the group in setting its own goals. Sometimes we think we know best what is to be done and we give goals to our people. This is a big mistake. Most motivated groups are capable of working out clearly-defined goals for themselves that capitalize on their own strengths. This can also be true with inexperienced groups if they're guided and instructed by a patient leader. The joint goal setting process cannot only result in perfectly acceptable goals, but it gives everyone an opportunity to buy into the goals and builds a tremendously strong commitment toward achieving them.
4. Let the group know that how well they work together is important to you - Don't ever forget the power of expectations that are voiced clearly and assertively. Remind the group that cooperation is an important part of what you expect from them.
5. Seize every opportunity to have the group meet and work together - Teamwork isn't just a concept; it's people actually working together. As with any skill, it improves with practice. We should provide ample opportunity for our people to practice. Our team should have regular meetings and the meetings should be managed well to reduce the investment of time and increase the beneficial results. If the group is having a problem, get the group together on an ad hoc basis to work out a solution. If a member of the group has left and a replacement is needed, get the group together to help decide on what qualifications the new person should have and help select that person. Let the group participate in interviewing candidates and in choosing which one should be selected.
6. Make it easy for people to talk to each other - Our leadership team can't meet daily as can teams in the commercial world but they can be encouraged to stay in contact between meetings through email and telephone. To help with this, you should publish and distribute a list of all team members together with their contact information and stress that you would like them to continue to work together so that goals can be reached more quickly. Then, since the essence of leadership is personal example, (You can't convince someone else that a certain thing is good for them if you show by example that it is not good for you.) you should use email and the telephone to help the group to keep moving between meetings.
7. Make sure all group members know how their jobs are important to the group's success
8. Make sure group members are cross-trained in each other's work - These are two different, but related ideas. Make sure all group members know that the role they play is indispensable to the group's success. Make them feel like links in a chain that can't pull its weight unless each link is strong. People want to belong and be part of the action. We can help by reinforcing this point.
By learning each other's jobs, people gain an appreciation for the problems faced by the others and better understand the value of the other members of the group. This also helps improve the performance and flexibility of the group by enabling it to continue to function well when members are absent or incapacitated, and encourages group members to help out each other when the workload is heavy. There is no reason that the leader's job can't move around among the team members. The same is true for other jobs, such as the treasurer's and the job of arranging and hosting programs.
9. Treat people like important members of the team - I added this idea to remind you of the notion of self-fulfilling prophesy--the Pygmalion Effect. If you treat people like important members of the team, they're more likely to become important members of the team.
10. When the team succeeds, reward the team - If the group did the work, all members of the group should receive equal recognition. The quickest way to kill a group feeling is for the leader to take credit or for the leader to reward members differentially. It's normal for some team members to do more than others, or to slack off from time to time and do less. If this becomes a problem it should be addressed directly and separately--not through the way the team is rewarded. Of course, we can't reward the team with money or promotions as is done in the commercial world, but we can reward them, and it is possible to do so lavishly, with praise; face to face, in the newsletter, and at members' meetings.
I should point out that it's possible to do all the things I'm suggesting here to build team spirit and to get people working together effectively, and some teams may still not learn to work as a unit. This is often because the behavior of one or more of the members is chronically dysfunctional, they refuse to subordinate their personal agendas to the group's, or their behavior otherwise so disrupts the group feeling that the team simply cannot function. This is a specialized problem and deserves specialized solutions.
Be careful about trying to boot disruptive people off the team. That may cause more problems than it solves in terms of stress and ill feelings among those who remain. Instead, I suggest that you enlist the help of an experienced organizational research and development specialist (some call these people "group facilitators") who can work with your team, help diagnose its problems, and provide advice on what to do. Some will actually work with the group themselves in a series of team building exercises. These folks can be expensive, but since your support group serves a worthy purpose without profit, you may be able to obtain competent donated services.
Finally, I'd like to give you a little checklist you can use to tell when good team spirit exists in your leadership group. The group is, indeed, united by its work when:
Dear Dee
by Dee Malchow
The Communicator has established this regular feature to help you deal with the common, and sometimes uncommon, questions you may be asked as a support group leader. We hope that Dee's expert and insightful responses to the "model" question each issue will contain will enlarge your repertoire of tools for satisfying your members' informational and support needs.
. . . . Editor
Dear Dee,
I've lived with a crushed foot for over three years. It gives me constant pain and I've undergone five surgeries on it. I finally found a doctor who would amputate it for me; my original doctor refused to. I know it must be done and I'm actually looking forward to being free of it. However, there seems to be something unnatural about choosing to amputate a part of my body. Can you help me with this emotional dilemma?
Feeling Weird in Wichita
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Dear Feeling Weird,
To start with, just because you feel weird doesn't mean you are weird. You're just in a very difficult dilemma. You've lived with significant pain and disability for three years and the only possible way out seems to be an amputation. It sounds like the proverbial rock and hard place.
One of the problems with amputation is that it goes against your inborn sense of self preservation. If you're up against life or death then it's a fairly simple choice to pick life over limb. But when your quality of life is being taken from you because of a severe problem with a part of your body, well that's a different angle. It's a good thing that you do have a personal attachment to your body or you (all of us, for that matter) might be inclined to discard parts more easily just because they have limitations or pain. (Of course, chronic headaches would be an exception!)
In the beginning when you dealt with a threatened extremity your focus was probably to save the limb at all costs. Usually the medical people feel the same way. Nobody wants an amputation and surgeons typically don't like to do amputations. So even though the injury looks pretty bad ("hamburger" is one descriptive word I heard), you naturally go for whatever it takes to keep the extremity on and hope for the best.
After a while (one, two, three or more years) you are forced to reevaluate the project you've taken on. Since the pain and disability from it are significant, you are forced to consider that "having a life" may be more important than having ten toes. Beside the unmanageable pain, you may be getting tired of hospitals, surgery, staying off the foot, and daytime TV. Your sunny disposition may have left and your spouse (along with other people that matter) may be thinking about leaving too. Your previous job is now filled by someone else and you are probably starting to view yourself as a crippled, dependent person instead of capable and productive. Your healthy body (with the surgeries and inactivity) has put on weight, developed resistance to antibiotics and other medications, and struggled with pneumonia, blood clots, bladder infections and constipation. The rest of your body now may have scars where bone, blood vessels, and muscle have been donated to your damaged limb. When people say, "Wow, you're lucky you still have your foot!" you say, "Really? Why don't I don't feel so lucky?"
So finally you are at the point of wanting to move on and get a better life than this. The amputation doesn't guarantee the end of the pain but the odds are in your favor that it will go from a disabling to a workable discomfort.
Your surgeon obviously did not come to the same conclusion. He (or she) still has a few more procedures in mind, didn't go to medical school to cut things off, and/or may have a bit of ego involved in the preservation of your extremity. Besides, he doesn't have to live with your chronic pain.
Now you have found a physician who thinks an amputation is not only reasonable but a positive thing to do for your life. You may want to get a second opinion just to reinforce that.
I further encourage you to talk to other people who have had amputations. Maybe you already have. Specifically seek out ones who have had to make this deliberate decision. You want to determine if they feel that their comfort and function has improved with an amputation. Ask them as many questions as you can think of, ideally in the presence of those who love you. Your family may have questions also and their support is important in this.
Unlike the surgeries you have already undergone, there's no turning back once this one is done. Some people who haven't felt your struggle, may question your sanity at such an extreme reaction to "only a sore foot." And that desire to keep your body intact still looms in the shadows.
Your expressed hesitation is, indeed, normal. But clear thinking appears to be in charge in your case. You're not being hasty with three years already in this project. You want to feel like you have given salvage a fair chance and five surgeries sounds like you have. Continue to stay in touch with other amputees, ideally in a support group. Particularly seek out those who have had to make the deliberate decision you are making.
Together with your reasonable medical counsel and support from family and other amputees, you are ready to move ahead. This is a life changing, permanent decision so make it with much thought, information and care. The thing to avoid is surprises after it's all over. The questions you ask and the information you get will minimize that. You will probably still feel a nagging uneasiness about this but that only proves that you're human. So many have told me after their surgery, "This is a workable project. My other foot wasn't. I should have done this a long time ago." I wish you the best!Do you have a question you would like Dee to address? If so, we invite you to ask Dee directly at deemalco@mindspring.com.
Dee Malchow, MN, RN, is a nurse case manager who is self employed and specializes in the care of amputations. She experienced a right below knee amputation at age 19 from a boating accident.
Amputee Coalition News and Views
Help Wanted - Regional Representatives Looking For a few Good Amputees
by Becky Bruce
Amputee Coalition's regional representatives are in search of some assistance within their regions. As you all know, each representative is responsible for maintaining current information on support groups within their region, initiating contact between new amputees and certified peer visitors, and publicizing and promoting the Amputee Coalition to those that have an interest in Amputee Coalition programs and services. The representatives have expressed an interest in finding volunteers within the regions they serve to assist them in providing information and support to amputees, family members, and healthcare providers.
If you would like to be involved in supporting amputees in your state, this might be the way for you to do so. Please contact the appropriate regional representative and introduce yourself. They are waiting to hear from you and would love to know more about you.
You can view the listing of regional representatives by visiting the Amputee Coalition web site (http://www.amputee-coalition.org/npn_regionmap.html) where contact information for each representative has been provided. You may contact your representative directly if you have any questions or are interested in assisting with the support of amputees in your community.
Regional Representative Openings - There are currently three regions that do not have a regional representative; region F (Alabama, Kentucky, Mississippi, and Tennessee); region H (Kansas, Montana, Nebraska and Wyoming), and region J (Arizona, Colorado, New Mexico and Utah). If you are interested in becoming a representative for one of these regions, please contact Becky Bruce by dialing toll free 1-888-267-5669 x 8113 or by email rbruce@amputee-coalition.org.
Send address changes and membership requests to the Amputee Coalition, 900 East Hill Avenue, Suite 205, Knoxville, TN 37915-2566. Amputee Coalition membership is $25 per year for individuals and $75 per year for Support Group Membership. The opinions and editorial viewpoints expressed in the Communicator are those of the authors and do not necessarily reflect those of the Amputee Coalition. This publication is partially supported by Grant No. US59/CCU41-4287-03 from the Centers for Disease Control & Prevention (CDC). Its contents do not necessarily represent the official views of the CDC. ©2000 by Amputee Coalition; all rights reserved. Articles may be reprinted with proper acknowledgements unless otherwise specified by author.