Stories

Hope / Indomitable Mary / Important things in Life / Personal struggles / Oh Clover! / Pediatric dysmotility problems

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HOPE!

By: Eleanor Milinusic, GPDA Board Member

“Nothing is more powerful than hope. One little nibble can keep a person fishing all day!”

Herbert V. Prochnow Jr.

Has your hope been stolen? Buried? How can hope be restored?

Since you are reading this, you either have a motility disorder or are a family member or close friend of someone who does. And me, I am writing this because my soon-to-be 21- year-old daughter has been ill for several years now with the motility disease known as “chronic intestinal pseudo-obstruction”.

Like all motility disorders, CIP is a thief. It robs you of normalcy. It interferes with daily routines. It steals your non-renewable commodity of time. It makes you feel miserable. It may even be unbelievably painful not some, but all of the time. Recurrent nausea, urinary tract infections, difficulty maintaining body temperature these are but some of the typical symptoms. I know that you can list the thieves that attack you these and other symptoms that make up your motility disease/disorder. These steal your hope.

Beyond these symptoms, though, is the dilemma of finding a supportive, knowledgeable medical support team.

• Finding persons who understand your symptoms.

• Persons who respond to your queries about new findings, or changes to medications.

• Persons who will listen as you explain the latest changes in your symptoms.

This challenge is confronted by many who have motility disorders. These circumstances undermine your hope and trust too.

For most, and definitely in my daughter's case, the symptoms are not easily supported by the basic medical tests. The test results often look normal. The symptoms are not easily observed by the medical team. And so you feel unheard, unaccepted you begin to blame yourself, to believe you are complaining about a non-existent “thing”; more undermining of your hope and its twin, trust.

So what did a day look like for my daughter before she was very ill? She got up (not great at early mornings though) and she went to school and participated in drama and sports. She took piano lessons and was a fencer. And she danced! She passionately loved her classical ballet classes and loved to perform with the professional troupes. She, in those years, did all of these things with energy to spare.

And then CIP (chronic intestinal pseudo-obstruction) hit with hurricane force. She passed out from the pain. No food would stay down. She became weak and the pain became continuous. She had to quit school. She had to stop dancing. She was angry. She was frustrated. She hurt. She was hungry but eating made everything worse.

We skip now through the searching for a diagnosis, for an answer to explain why her gut was not working. We skip over the unproductive visits to specialists in our hometown and the various centers visited all over North America, to the psychologists and psychiatrists we saw (after all she was “skinny” and couldn't eat and had been a dancer!) to the total destruction of hope. That is, all hope except a mother's grim determination that there had to be an answer.

There had to be an explanation for what was happening to my daughter. Leaving out the details, we finally came to an alternative clinic where my daughter and I were surrounded by a caring, supportive medical team who listened. And while they listened, they tried to restore her body to a position where it might be able to start healing itself. It took the markers they gave her to swallow seven weeks to pass through her body! By then, though, they had her off drugs and her blood sugars were remaining mostly within normal ranges, although she still could not eat.

Her nausea had gone and her body temperature was remaining stable. This team was able to figure out that she either had a problem with her pancreas or her small intestine, as many of the other complications of her disease (then, still undiagnosed) had calmed over these weeks, so they referred her to a pediatric gastroenterologist who became her diagnostician.

After several months of tests and trials, all possibilities were eliminated except for CIP. That was in 2001. Then getting a supportive team at home still remained. But a glimmer of hope and some trust had returned.

Can you imagine, and you probably can since you too have a motility disorder, how one can feel finally validated, finally heard, and finally knowing you and your symptoms are not crazy?

How one can feel elated to get the news that one has a horrid disease? The struggle to find out had been so difficult, so fraught with destruction of trust in the medical system, so ingrained with explanations that victimized the patient and family that the news, the diagnosis, felt like a time for celebration.

Now there was at least an explanation, a name for what was happening. Now maybe, just maybe, there would be something to do to “fix” the problem.

My daughter had been through several stages of breaking down hope:

• Fear of possible addiction to the pain medications;

• Victimized by the medical system because it could not diagnose her;

• Loss of her ability to participate in activities she was passionate about;

• Loss of ability to be normal, to attend school, to go to parties with friends…;

• Loss of desire to try anything new;

And the list goes on.

Now she faced rebuilding hope. But like anything that is broken, sometimes you need a manual. We tried counseling to little avail. We tried more pain medications, but the doctors still did not understand how severe the pain was all the time and how it escalated unpredictably. We tried alternative approaches and some of these made some symptoms a little easier to bear. I say “we” here because sometimes I was the only one encouraging her and I was the only one taking her to appointments and urging her to try one more thing. So despite the diagnosis, she was still ill and still unsupported, but at least her symptoms were validated by a name.

Then finally we started to learn. To learn, that we could not change attitudes and knowledge outside of our own; that we could not change the fears and misconceptions in the minds of others. That we could not change the course of the disease, though we could make choices that made symptoms somewhat easier to bear or others that made symptoms much worse. And, that the world was not going to bring an education to her, nor was it going to provide a bevy of friends just because she now had a name for her disease.

Over the months, with learning that came from unexpected sources, my daughter's confidence grew. She learned to speak up to doctors and to repeat clearly her questions when these went unanswered. She learned how to work within the system but still achieve the support she needed. She learned how to get out and find something she could do in spite of not feeling well. She learned how to find a way to get a university education even though she could not yet attend classes regularly. She learned how to make and keep friends and even recovered her passion about life.

All this in spite of pain and low energy and a mother whose fears for her daughter's future were enormous and were now, as her daughter forged ahead, holding her back. And now Mom, who had taken the initiative earlier, needed to grow and regain her lost hope and confidence, and she did. Now, we forge ahead. We are friends and we are a formidable team supporting each other in all medical and other things, helping each other build a brighter future despite CIP and its “nasty curves”. We are proud of each other. We both move courageously forward.

No one ever told us what to change or how to change. We really did not know what to do. We did not realize that the shattered HOPE had to be restored and that there was a way to do that. We have discovered that, just like the process of restoring an immune system, restoring hope required a method at least for us. So, leaving out the details of how we arrived at this point, here is a summary of what we learned about rebuilding hope and trust:

• Choose not to be a victim. Confront those who try to victimize you. Do so with the strength of conviction and integrity within.

• Be bigger than your medical challenges. LIVE in spite of the challenges your body provides.

• Become unstoppable.

• Have clear, definable goals, written ones!

• Be confident. Learn all you can about your disorder/disease. Explore the possibilities so you can ask questions and be in control and work as a partner with your medical team!

• Believe that a cure may become available, but vow to live NOW.

• Let go of all negative thoughts, of guilt, of “if onlys”, of anger, of frustration, of resignation to the illness, of thoughts of unworthiness.

• Take action. PARTICIPATE IN YOUR FUTURE.

I know YOU CAN DO IT! “If my daughter could do it, you CAN do it!”