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The power of sharing stories

Finding The Infinite In The Infinitely Small:

A Cure While Waiting For The Cure

 

As a scientist living with the dream of finding a cure for the CCM disease, I would have loved to contribute with a breaking news article reporting the development of a novel effective pharmacological therapy for disease treatment or prevention. Indeed, rapid and significant progress into the characterization of molecular mechanisms underlying the pathogenesis of CCM disease have raised the hope that such a day is not so far away.

Nevertheless, while waiting for that day, I would like to refer to a recent story constituting an eloquent, anecdotic and emblematic example of the usefulness of the international cooperation among CCM focused organizations.

 

As president of CCM_Italia and AIAC (Associazione Italiana Angiomi Cavernosi), I was contacted by many Italian CCM affected people or their relatives, who were asking for information and advices, or were simply looking for someone that could listen to their stories and understand them, or for someone else wishing to share their own experiences, thoughts and emotions. As sharing stories brings people together, these opportunities were very useful in building a collaborative and supportive CCM community in Italy. In fact, whereas some affected people were happy to be listened to and share their stories, thus feeling not alone, others were comforted by the thought that their experiences, though of no direct benefit to their own situation, might benefit someone else.

 

For instance, you may feel the optimism emanating from the following excerpts from two letters sent by Mrs. Maria, which I like to refer to as icons of life giving them corresponding meaningful titles:

 

1 - “I have three beautiful children, two adorable dogs, and a wonderful life!

«… On September 22nd this year the laboratory where I did the MRI analysis has told me that I have a cavernous angioma that bled recently. So it's not stress! Ok, maybe now it is possible to start to see the "light": at least I know what it is. On the 31st of this month I have an appointment with a neurosurgeon ... hope everything goes well!

I forgot: my name is Maria, I'm 43 years old, I'm married and I have three beautiful children, two adorable dogs, and a wonderful life!»

 

2 - “This is living! :-)

«… I think that when you find a doctor who is able to inform and not to leave you in the ignorance of not knowing .... well this removes all fears! In this way, they gave me the opportunity to explain to my children without fear what "all together" we're going to do on the New Year. This is living! :-)»

 

Furthermore, you can feel the bittersweet willingness to walk through problems and the strength of Rita, the mother of a boy affected by an inoperable CCM lesion, who is warding off discouragement by spending a lot of energy in supporting the Italian CCM community and promoting CCM awareness, while fighting against bureaucracy:

 

3 - “Courage, together we can win this battle!

«My son has suffered from diploplia, seizures, headache and migraine; sometimes he gets tired for no reason, but there are days like today when life smiles. It is hard to live with a bomb in the head, but thanks to God he is a carefree boy. When he is sick, he repeats to feel fine. Every day I am confronted with my sense of powerlessness. … The time has come that also in Italy there may be an association dealing with the rights of those who have a brain cavernoma. Courage, together we can win this battle!»

 

On the other hand, I had hard time in trying to provide some relief to a few people who are facing difficulty in accepting the signs of disease, thus going back and forth between denial, anger, fear, grief and loss feelings as their physical health does not improve or worsens.

However, in these cases I had the opportunity to take advantage of the exceptional sensitivity and wisdom of my friend Ian from Cavernoma Alliance UK, an extremely courageous and wise person who has been experiencing symptoms of CCM disease over the last 25 years.

For instance, here is an excerpt from the letter he wrote to Mrs. Anna, an Italian lady recently diagnosed with CCM, whose signs of disease are constantly looming over her head like a storm cloud ready to burst (“… now my life is broken ... it's terrible, I can only cry … ”).

 

Dear Mrs. Anna,

I was given your email address by Francesco Retta, who is a friend and established the CCM Italia, the partner organization of Angioma Alliance in the US and Cavernoma Alliance UK.

I believe Francesco has already told you of my health situation.  I have known about my CCM for 25 years next month.  I shall be holding a party! … Over the course of 25 years, it has been a downhill trajectory and magnified with the four symptoms I have, namely … Fortunately, my cavernoma does not seem to have affected me as deeply as yours, although as Francesco has sent you the image it is quite a biggie and resides in my brainstem.

I do hope that you manage to conquer the condition. I know it is very hard to live day by day.  One of the things the condition has taught me is to appreciate the seemingly mundane and participation in life. …You say you have difficulty with the outside and your independence.  My advice is to get in touch with Rita at CCM Italia.  Maybe she can give you some suggestions as to what work you could do for others.

Best wishes, Ian

 

I could not find the words to express my gratitude to Ian as I believe his letter, and in particular the underlined sentences, gives us a clear understanding of how much strength can come from feeling the pure essence of life.

Only great people like Saint Francesco were able to figure out how it is possible to discover "the infinite in the infinitely small" and how much this discover can be beneficial in helping to “manage to conquer a bad condition” in the absence of significant alternatives.

 

Sharing stories and struggles, instead of living in hiding and denial, may therefore help to vent frustrations and meet others fighting the same illness with positive thinking. Furthermore, it could be the key in learning how to find balance while walking the first, most difficult steps across the long, thin and fragile tightrope of CCM disease, appreciating the simpler things in life and rejoicing in any ounce of hope. Joining a support group can also help to find the simplest way to overcome obstacles and still accomplish goals, thus bringing the confidence that you're able to live a full, rewarding life and maybe even a more meaningful life than if you hadn't gotten the illness.

 

Francesco Retta