Making Friends With Illness and Pain.....Acceptance

I have had a lot of time to analyze my own experience, that of our children and to listen to other's stories of living with pain, disease and disability. I have watched how coping plays out during many months at Ronald McDonald House living with other families.

Long term illness and especially pain can break you. Strangely, it can also become a friend.  Not a friend in the friend sort of way....but something you get used to, are familiar with, know how to handle. If you have a chronic illness you may know what I mean.

It can shape who you are in a positive way if you let it.
At the same time, this does not negate the  many difficult, sad, heavy things about it.  It ain't easy to hurt.

I am writing of acceptance as a way of finding peace. Not waving a white flag and giving up, but deciding to embrace suffering and be happy anyway.

One of my first observations of this was many moons ago when I was a pediatric dental assistant. Every so often, because they required more attention then our average patients, we had a day we devoted to handicapped children. We would always remark how much we enjoyed these days because, first, handicapped children are so special and second, these were the best parents in our practice. We would marvel that they just didn't get worked up over anything. They had been through the ringer and came out better than when they went in. They were warm, friendly, never demanding and able to cope with a great sense of humor. They could see what really mattered in life and weren't distracted by things being easy.

You see, when things are easy, we don't appreciate the small things and the small things are what life is made of. Hardship can mold a person into something beautiful.

I see this as we move through life knowing so many who are sick and hurting. There is a real difference in how folks handle this difficult life that they have been dealt.  It can break a family, relationships, even one's own personality. It can be beautiful or tragic.  It's a choice.

This is not to say making a positive choice to learn to live with illness and pain is easy or that it isn't frustrating, heartbreaking, lonely and isolating......because it is very much those things.  But it is a choice to go on happily in spite of them. 

How do people get a diagnosis of something terrible and come out of it eventually smiling and with some style? 

We sat in the waiting area of a neurosurgery office across country, 3,000 miles from home. We were there for another consultation for another child. I had already had several surgeries/procedures myself and was in the midst of learning a "new normal". A woman was sitting there and had been watching us. She finally came over and asked about our diagnosis', wanting to know HOW we lived with these monsters called Chiari Malformation, Ehlers-Danlos Syndrome and Tethered Spinal Cord Syndrome and were still smiling. She shared our diagnosis....and was not smiling.

She said she had lost everything and everyone after being diagnosed. She shared how no one wanted to hear about her many appointments, struggles with pain, financial ruin and how terrible her life now was. After a long chat (the doctor was very behind) I began to see what was wrong, where her sadness and bitterness was coming from.
The acceptance was not there. The regret and mourning that rightfully accompany a difficult medical diagnosis had consumed her instead of her letting it happen then moving on, revisiting it only now and then on a hard day. A long process to be sure.

This is totally understandable right?  Doesn't a person have the right to feel sad, despondent even, longing for people to understand, have pity and offer assistance? Yes, I they do....but the attention cannot last forever. The disease progresses, things get harder and harder but the newness has worn off for those not living it.  It isn't fair but it's reality.

Friends and family get used to the way you may limp, or seeing you in your wheelchair or seeing you with no hair for the umpteenth time. They no longer blink that you have multiple doctor appointments every week, or multiple surgeries in a year, it's normal. It may not occur to them that all the things that come along with a diagnosis, cost money....a lot of it. They just do not understand all the facets. They do not, cannot understand because they have not been given this cross to carry....you have. And it isn't their fault.

Then there's the expectations we place upon ourselves. Those are the worst of all aren't they?  I know for me that's the hardest part. I want to try harder, push farther, make more plans, go 100 mph....but the body just won't let that happen. Frustration.

In our family, a medical life is the only life many of our kids have known. Regarding pain, we all have learned to live with it in our own ways. There is no complaining because it doesn't help. There is no attention seeking because everyone here has the same things.  Drama is not drama when it's normal. We try and make friends with the things in our medical life that can be so destructive and work around them.

There is a lovely mom and daughter we met through all this. They have the same diagnosis' we do. This kid has had 20+ brain surgeries and countless days in hospital. She suffers...a lot. Her Dad left as soon as the medical ball started rolling. The mom cannot work full time because she has to care for the child and her sister who also shares the same diagnosis'. The medical conditions they have are rare so she is constantly explaining and re-explaining to new doctors things they know little about. Few understand.

With all this, they never, ever complain. They smile, socialize, laugh and simply shrug their shoulders when asked, "How do you DO this?"  There are no excuses made, no blaming, no feeling sorry for themselves. All they want to do is learn to live with these conditions and be happy. Searching for a way for the girls to function in the best way possible.

Why such a difference in people's reactions to illness? I don't know. But I do see the results of both choices and there is no happiness, no relationships, no moving forward when it isn't accepted.

These are some of the questions I asked myself long ago and I ask others when they seek some answers.

*Does it help to blame?  Then why bother even if you want to know the answers?

*Does it help to complain, even if it is justified?   Nope, it drives folks away...far away.

*If you take your frustrations from pain and illness out on others, does it make the pain go away? Nope, pain is still there AND you are alone.

 *Do you realize always wanting to talk about it and having it validated makes you the center of attention?  If this is often then to outsiders it makes you look self-centered when you aren't.

Because something is always hurting or bothering you, must you make others aware of it?

 *Are there others who suffer more?

*What are the blessings in your life?

 Having a disease can make us very self centered not because we feel important like in narcissism, but because our bodies are always making us aware of ourselves. This is so annoying but something we have to learn to ignore. This is a skill.

I have seen over many years that the more acceptance I practice daily, the more peace I make with pain. It's still there, it can still drive me nuts, but it's okay (well, usually). I know this goes against the grain of many people. Like accepting defeat. But it is NOT. It is accepting something I cannot change. It is arranging my days to achieve maximum effort and get something done while appearing as normal as possible.

It really is a skill. Practice. If, when asked how you are, you smile and say, "Oh, pretty darn good. You know, the usual garbage that goes along with this lame disease. But I am thankful it isn't much worse." An Oh-Well sort of attitude, I guarantee you, will get more attention than you do giving gory details or the results of your last set of labs! The less you seek attention with your situation, the more folks will care.  When you are smiling, happy, asking others about themselves you become less self aware of the hard things your body is enduring.

Find a way to accept what is hard and unchangeable in your life. Try and make peace with what God has asked of you.

Do it with prayer.

Do it with style.

Do it with a smile.

Do it to gain self esteem...... it's an achievement.

And it works.....most of the time.

~Blessings~
Lisa