Archive for the ‘A New Life with ALS’ Category

Are you living with ALS or dying from ALS?

We all have a choice at this defining time in our lives. Readers of this newsletter have been touched by ALS, and those of us who have the disease must make some of the most difficult decisions we’ll ever face.

We’ve chosen to live with ALS. Redefining ourselves has been an evolving and necessary process in making that commitment. We had to let go of our old life and our old dreams, and create a new life with new dreams.

A large part of our new life is the opportunity to serve as co-chairpersons of MDA’s ALS Division. We’ve been given an incredible honor — to represent an amazing group of people. We don’t take this responsibility lightly.

When we tell people we feel oddly blessed by this disease, that sometimes takes them by surprise. We have a daily reminder of how fleeting life is and a reminder to take advantage of every day we’re given, whether it’s with each other, Christopher, family or friends. No one is guaranteed tomorrow.

The value of our relationships has been greatly enhanced over the last two years. One of the most important lessons we’re trying to teach our son is that people are defined by their character inside and not by the outside shell our bodies represent while we are on earth.

Our new mission in life is threefold. First, to raise public awareness of what ALS is and what its effects are. We prefer to call it ALS instead of Lou Gehrig’s disease, because it’s our experience that when Lou’s name is mentioned the general public assumes they are knowledgeable about ALS, but in reality they simply recognize the name. Of course, we’re very thankful for all the attention that’s been brought to ALS through his name.

Our second purpose is to raise funds for research, which is why the first point is so critical. People are more likely to open their wallets for a cause they can truly relate to.

Our third, and most important, purpose is to provide help and hope, whenever possible, to all the people affected by this disease.

Hope comes in many forms. Right after Steven was diagnosed, we clung to every word that was mentioned about ALS in the media; each bit of coverage meant that more people were learning about ALS, and that gave us hope that a treatment or cure was being actively pursued.

In order to accomplish our new goals we’ve opened up our lives. We’ve found that, once we tell our story, people don’t treat us the same, for better or worse. But changes in our relationships are worth it for such an important cause. We believe that, the more people we meet, the more lives we can positively touch.

We’d like to leave you with this thought: Not one doctor or 100 doctors can tell any of us how long we’ll live. We mustn’t cling to the words we heard when we were first diagnosed, predicting our future. Though we’re uncertain how Steven’s ALS will progress, we’d rather have the quality of a few short years than the quantity of numerous years without the meaning and purpose we have.

We believe that this disease is largely about your mental attitude. If you let it get the best of you, the disease wins.

So fight! Remember it’s how you chose to live, not how you died, that is your legacy.

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