Coping with Chronic Illness


When our heart breaks, it breaks open, allowing us to include more than we ever could

We all experience hard times. In an economic downturn we may lose our job, or a natural disaster may sweep away our home, and death may claim loved ones. But regardless of the challenges we face, we can eventually solve or recover from them.

But what if you were diagnosed with a chronic illness, such as Alzheimer's, Huntington's, Parkinson's, multiple sclerosis, or cerebral palsy? As a rule, the difficulties caused by these diseases do not go away. How would you feel and what would you do?

To successfully live with a chronic illness you need the stamina, perseverance, and resilience of a hero. We all dream of becoming heroes, although none of us want to face and live with the daunting obstacles that heroes do. Those who have chronic diseases did not choose to become heroes, life chose them.

To these silent sufferers life says, "I want you to show the world how to live a full life, despite the severity of the difficulties you face." Laurence G. Boldt (one of my favorite authors) describes a hero, "The hero, in living her own life, in being true to herself; radiates a light by which others may see their own way."

The challenge of chronic illness heroes is not to overcome their disease, but to conquer themselves. They need to defeat their fears, doubts, and despair. They need to rise above the pain and hardship, welcoming each new day. No easy task. That's why they're heroes.

A reader, who I will call Sally, is one such hero (heroine). She is nearly forty and lives with and cares for her feeble mother. Since the age of 28, Sally has been in and out of hospitals and near death several times. She has lived with a stream of illnesses and medical problems. Her primary disease at this time is multiple sclerosis (MS), which leaves her permanently disabled, unable to work. This is frustrating for a bright woman with a Masters Degree.

Sally has suffered tremendous loss. Loss of health, mobility, job, and friends. Perhaps the most devastating was the loss of her boyfriend. After they parted, Sally lost faith in others. She wrote me, wondering if I could share a few ideas about regaining trust in people. The ideas I will share apply to all readers, but the end of the article will deal with resources specifically for MS patients.

TRUST AND RELATIONSHIPS

Sally writes, "I find it difficult to trust people and my future." Well, if she means it is difficult to trust SOME people, she is right. For it was some untrustworthy financial investors and greedy CEO's that caused the economy to come tumbling down. But it is equally true that some people are trustworthy. And as far as the future goes, the only certainty is that it will be full of surprises, some good, some challenging. Since you can't trust the future, CREATE it by doing everything you can now to prepare for a better tomorrow.

She goes on to ask, "How do I tell who I can trust?" You can't tell, BUT if you learn to trust yourself, when others let you down, you'll be able to carry on. The reason we would like to know who we can trust is that we would like to avoid risks, but we cannot. Anything worth doing in life involves taking a risk. Building relationships and trusting others takes courage. But if we help free the hero within us, we won't have any problems. Act like the hero you really are.

Discerning how reliable a friend is, is difficult because we take part in the creation of the relationship. For instance, if I start out a relationship looking for signs that the other party is trustworthy, the implication is that he or she may be untrustworthy. In other words I will remain suspicious until the other party proves their worthiness. But that day may never come because my suspicion will be detected by the other party and it drive us apart. Besides, even if my new friend proves to be reliable, all that proves is that they are reliable today. There is no guarantee that they will remain so tomorrow, next week, next month, next year, or 10 years from now.

Looking for guarantees is fruitless. When my wife and I met 47 years ago, we simply assumed that we could trust one another. By trusting the other, that's what we received back. Suspicion, cynicism, doubt, and insecurity kill trust. Faith in humanity, confidence, and positive expectations build trust.

To be truthful, the chronically ill are at a great disadvantage when it comes to making friends. Their special needs may interfere with the interests of others. For example, bowlers, golfers, and hockey players would rather play sports than spend time with an inactive disabled person. No one is at fault here; it is just a sad fact. But when a disabled person finds friends spending less and less time with them, it is extremely painful. To make matters worse, the lonelier a disabled person becomes, the more 'needy' they appear to be, thereby making it all the more difficult to make close friends.

When some of the disabled conduct their daily affairs, such as banking, shopping, or stopping for a bite to eat, they may appear to be demanding and aggressive. This is simply a survival mechanism because they have learned that if they act gently and meekly, they may be overlooked. They virtually have to shout to gain recognition. But once they do so, they are thought to be aggressive. It's sort of a catch 22. Hopefully, the non-disabled will come to recognize the problem and treat the disabled with the respect they deserve.

When the disabled understand why it is so hard to make friends, they will be less apt to blame others and experience less pain. But what should the disabled do in such a troubling world? Two things. First, accept what is. It may be unpleasant, but be heroic and generous; don't allow yourself to become angry or upset, for that is counterproductive and will only worsen the situation.

Second, be loving. Be kind. Be compassionate. This last point almost sounds counterintuitive. A disabled person may retort, "Be compassionate? I'm the one who is disabled! Shouldn't others be compassionate toward me?" The answer is we ALL need to be compassionate, able bodied and disabled alike. The reason I suggest cultivating a compassionate and loving heart is because it is the shortest distance between two hearts. It builds trust and friendships. It lightens the burdens of disability and builds hope. It provides courage and allows the disabled to become true heroes.

Yes, it would help if the disabled are more patient than an ordinary person, more understanding than an ordinary person, and more forgiving than an ordinary person. In a word, it would help if they can muster up the strength to BE MORE than an ordinary person. For if they wish to live fulfilling lives, they need to take heroic action; becoming a hero is their salvation.

Sally had an extended relationship with a man who drank excessively. She still feels betrayed by the fact that he wouldn't stop drinking to save the relationship. Now that it is over, she is deeply hurt. Although we understand and sympathize with her feelings, it is time to move on. There is no point in holding on to something that prevents you from moving forward. Perhaps these two steps can set her free:

1. The price we pay for the gift of life is pain and loss; ACCEPT it. When it comes your way, shrug your shoulders and say, "Well, I guess what I wanted wasn't meant to be, but I'm sure something better will follow." In life stuff happens, when it is something you don't want that happens, accept it, and don't label it as bad. Rather, label it as the seed for something better.

2. Accept the weaknesses of humans. Your ex is merely another human with imperfections. He did not betray you as much as he betrayed himself. As long as you look at it as a betrayal, you hold on to it and inhibit the growth of trust. Forgive him and let it go. Then, and only then, will you be ready to move on. It becomes easier to forgive others when we understand there are no bad people, just bad choices. Of course, when I suggest that you forgive him, I am not suggesting that you marry him. After all, life is enough of a struggle. On top of that you have the added burden of disability. It doesn't make any sense to make your life even more difficult by marrying an alcoholic. So, forgive him; wish him well, and move on.

Here is some sage advice from Deborah Morris Coryell, "When the heart breaks, it can break open. Breaking open allows us to include more than the loss, more than the pain and betrayal. It lets us go beyond the limits of who we believed we were." To learn more, visit her web site:
http://www.goodgrief.org/counsel.html

Sally has also been hurt by a toxic friend and stopped seeing her. It is true that when we have a limited amount of time to spend with others, it generally makes more sense to hang around those who will inspire us, rather than those who will bring us down with snide remarks and hurtful comments.

Yet, there is also a need for balance. If I reject some because they are 'toxic,' why am I surprised that some reject me? Is the person who turns me off 'toxic' or someone I don't yet understand? Perhaps I haven't been looking hard enough to find their good points.

Besides, how can I practice forgiveness and cultivate compassion if I'm unwilling to associate with 'toxic' acquaintances? Why am I harping on this point? Because I have discovered that often the worst of people can become the best of friends. Remember what I said about becoming a hero? Well the Talmud describes what it is to be a hero, "Who is a hero? He who turns his enemy into a friend."

THE IMPORTANCE OF THE RIGHT ATTITUDE

A common mistake of the disabled is to focus on their physical problems rather than their attitude. There isn't much that they can do about their physical symptoms, but a great deal that can be done to squelch negative thinking and focus on the positive.
Positive thinking is something we all need, but it takes on added significance for the disabled. There are three reasons for becoming a positive thinker.

1. Our thoughts create our feelings, and our feelings are the motive for our actions, and our actions determine the results we get. So, if a disabled person frequently THINKS life is unfair, that makes him ANGRY and causes him to act HOSTILE, which ALIENATES others, leaving him with little support.

2. Our feelings (emotions) do more than motivate us to act; they also have a direct impact on our body. Negative feelings weaken the immune system, cause stress and disease, and drain us of energy. Obviously, this is just the opposite of what anyone, disabled or not, needs.

3. A chronic illness and negative thinking can easily lead to clinical depression. The disabled need to stand on guard and avoid sinking into depression at all costs. After all, they already have more than enough problems to contend with. For this reason I strongly recommend reading and working with this book: "Self-Coaching 101" by Brooke Castillo. I have recommended it in an earlier article, but it is too important to mention just once. It has the clearest explanation of how we create our reality with our thoughts and helpful exercises to get our thinking back on track. You can order the book at the author's web site: http://www.brookecastillo.com/self_coaching.html or at Amazon.

We cannot choose what will happen TO us, but we can choose what happens IN us. That is, we can choose to focus on the positive. For example, although he became confined to a wheelchair after his accident, W. Mitchell (author, TV host, and businessman) said, "Before I was paralyzed there were 10,000 things I could do; now there are 9,000. I can either dwell on the 1,000 I've lost or focus on the 9,000 I have left."
(http://www.wmitchell.com/amazing.html)

Because of the pain of a failed relationship, Sally cannot imagine herself in a new one. But I encourage her to be open for such a possibility. Remember, there is more than Sally's life at stake; there is also the life of a potential mate. As long as Sally avoids starting a new relationship, some deserving male will be denied the pleasure of her company.

The Internet has many dating sites specifically for the disabled, making new friends and relationships just one mouse click away. Should Sally choose to explore this option, I suggest she read Thomas Voullemier's article on "How to use disabled dating sites safely" (http://swankylies.com/how-to-use-disabled-dating-sites-safely/)

Even if Sally were to meet a new man, she says, "One thing I don't want to happen is to make changes in me for another person." Isn't that exactly what her ex thought and the cause of their separation? I'm not suggesting that she should change for a man, but I encourage her to change for herself, which will make her all the more attractive to others, male and female.

Despite her disability, Sally has to do a lot of work at home, which includes cooking, cleaning, and shopping for her and her mother. This can be quite grueling. As if this wasn't enough, she also works as a volunteer whenever she can. Now hold this thought for a moment because I am going to switch gears and tell a story; then I will come back to Sally.

While still a teenager, I read the true story of three men that went mountain climbing in the Alps and got caught in a blizzard. After struggling for several hours, seeking shelter, one of them collapsed. Of the two men who were still standing, one said, "Help me to carry Tom to safety." "No," replied his friend, "the both of us are on the verge of collapse and if we don't find shelter soon, we all will freeze to death. Better one dies than all three. Leave him here, and let's go on without him." "I can't do that," the other man said, "You can go on ahead and I'll do whatever I can."

One of the men went on ahead and the other stooped down, haltingly picked up Tom, and after great effort, placed Tom on his shoulders. Trudging slowly, the good Samaritan could no longer see his friend who went on ahead. After what seemed an eternity, the man carrying Tom found a cave suitable for shelter. After entering, he carefully lowered Tom, placing him with his back against the wall. After catching his breath, he looked at Tom and to his horror discovered he was dead.

The blizzard ended late at night and the next day a rescue party found the two in the cave. They explained how they also found the third member of the group, who froze to death as he searched for shelter. "The only reason you are still alive," one of the rescuers said, "is because you carried your friend. The effort you made kept your body warm enough. Had you abandoned your friend, you would have frozen to death before reaching this cave."

Let's return to Sally. The work she does as a volunteer and at home is the equivalent of carrying Tom. The very work she dreads because of the enormous effort it takes is what keeps her mobile and able to function. In a word, Sally is fortunate to have so much to do!

Resources For MS Patients

1. Books

a) "Coping with Multiple Sclerosis" by Richard Reynolds and Cynthia Benz, Vermilion, 2005. Here is a review of this book by Mrs. Helen Hogarth from Teesside, England: "A witty down to earth look at the diagnosis, management, positives and negatives of having MS. I have worked for nine years as an MS Counselor and never found a better book to recommend to both the newly diagnosed and also those who have lived with this condition for years. The cartoons give the book an added sense of humor that is often lacking around Multiple Sclerosis but once you have learned to laugh about some of the challenging symptoms then you are on the road to management and recovery." To order this 320 page book  visit Amazon Here.

b) For the patient's point of view, see "Coping and Prevailing with Multiple Sclerosis and other Life Struggles" by Thomas Bayuk. Available at: http://www.copingandprevailing.com/book.html. If you cannot afford the $14.95 + $4.95 shipping, the author will send you the book for free. To find + out more, visit the web site and click on the link SPECIAL OFFER.  You can also try Amazon here.

c) "SPEEDBUMPS: Flooring It through Hollywood" by Teri Garr and Henriette Mantel, Plume, 2006. The last third of Garr's 256 page book is devoted to multiple sclerosis. It is available at at Amazon here.  To see an interview with Teri Garr discussing her book, visit:
http://www.youtube.com/watch?v=9YJEszvna_Y

d) Gary P Owen, an MS patient and author of numerous articles on MS strongly recommends this e-book, "How to Reverse MS Now!" by Matt Traverso. Found at: http://www.fighting-ms.info/

You can read Gary's articles on MS at
http://ezinearticles.com/?expert=Gary_P_Owen

2. Web Sites

a) Here is a web site to learn from and contribute to:
http://livingwithms.ca/subscribe.html


b) More women than men get MS. Here are some helpful sites organized by women:
http://www.bettyshouselifeafterms.com/
http://www.ivonne-radtke.de/e-start.html
http://www.msstrength.com/

c) For a man's point of view, see:
http://www.mymultiplesclerosis.gr/

d) For the latest multiple sclerosis information delivered straight to your inbox, sign up for the Multiple Sclerosis newsletter from WebMD. You can sign up at the bottom of this page: http://www.emedicinehealth.com