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An Open Letter to Myself Just After Diagnosis

Dear Robert,

You have just heard some news that seems to have crumpled the life that you had written for yourself and thrown it into the bin. Multiple sclerosis is a serious chronic illness, and its course is often uncertain. As I am nearing the end of my fifth decade, it feels a good time to let you know that this diagnosis was not the end of the theater that will be your life.

So far you have married, and divorced, and have two fantastic children. Over the years you have been an employee, and an employer, operated a small business and incredibly produced a 14-part television series. You have traveled the world, selling marble to the Italians, and fish to the Spanish. You tasted beer brewed by the most northern brewery in the world, in the town that it is brewed. The Northern Lights have been a spectacle that you have seen on a day that had only 3 hours of daylight.

Why am I sharing this with you from the future? Being diagnosed with a chronic illness does not mean that your life must stop. It will continue. There were dark days when you felt as if the world had conspired against you, that you were buffeted on a turbulent ocean, thinking this would never end. But it did end, and you have had many bright days. Days that you have been in love, that you have laughed that deep belly laugh that makes your cheeks hurt. That is the point, your life will have ups and downs, and it is this roller coaster that will give your life color. A depth that signifies that you have lived your life, facing the obstacles head on.

The one thing that you will find difficult is that you will compare yourself to your contemporaries and feel regret that you don’t have their lives. Running marathons, managing great businesses, having perfect lives. These same people will look at you and think that you have an unbelievable ability to smile, despite your constant pain, fatigue and uncertainty. The reason you can smile is that you will come to understand that everyone has a different life, and the rules, and objectives of each person is different.

If there is one thing that you should work on, it is that you always find it difficult to show how you feel. By holding these emotions back you made your own life more difficult. It also made it more difficult for those around you to help, as they did not know the turmoil in your life. If you are sad – cry, angry – shout and if you are fearful, embrace it and move through it. Learn to meditate, and keep a journal. Your life will be rich, interesting, and you will have many stories to tell.

Having a chronic illness does not mean life stops, it just means that it has taken a different direction, and you get to make the rules.

Live with passion,

Robert (49)

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