2009

     Another year has passed and we have seen many changes. Our lives are full, but with limitations. Sara has made a huge change in jobs, leaving her position at Meriter Hospital after 35 years as a pediatric nurse. Over the last several years Meriter has been trying to move away from pediatric care and leave that to the new UW Children's Hospital. This caused Sara to re-evaluate her future at Meriter. Sara's heart has always been with helping kids, and the lack of kid care at Meriter has been devastating for her. I believe that the hardest decision she has ever made (other than marrying me) has been to leave Meriter Hospital which has been her home since graduating from nursing school in 1973. Although Meriter will never admit it, Sara's leaving was a critical blow to their nursing care. She was admired by all, and was one of the most valuable resources they had when it came to caring for kids. I know this as I have met many of the parents with children that Sara has cared for over the years. It is amazing, but when you take care of someone's kid it forms a lasting bond that is forever.

     Sara regularly gets cards from parents that had sick kids over 30 years ago and they still to this day consider her a part of their family. I see this and it makes me realize how important her contributions have been to so many in our community. Recently a man that she had taken care of many times over the years since he was a young boy, Doug Birschbach, died of complications from a disability he has fought all of his life. She has kept in contact with him for so many years and he always considered her a very special friend. We went to his funeral and when his mother saw Sara she embraced her like no-one else I have ever seen. It was then that I realized the impact she had on Doug and his family. They were so affected by the fact that she had come to bid farewell to their beloved Dougie. I had to fight off my tears when Doug's mother hugged me and whispered into my ear; take care of her, she has meant so much to our family, we love her so much. In all of my jobs, my reward has always been money. I would give anything to receive the admiration that Sara gets from her work efforts. There is more to life than just money. Each of us needs to get stroked from time to time, it is so important. I am so proud of her, words can not describe.

     When you know how special someone is like I do, and then know that she has an incurable disease like MS, it is hard to make sense of it all. If there is a God, I can't for the life of me understand how he would let something like this happen to someone who has given so much to so many. I guess that this is the cross that she must bear as MS makes no exceptions for anyone no matter who they are or what they have done. Sara's MS is a disease that is slowly sucking the life from her each and every day. She can feel it, and I can see the slow decline of her ability to "move". It is a cruel disease, one that works slowly in her case to rob her of the everyday joys we all take for granted. When was the last time you thought twice about being able to run up a flight of stairs? Sara would give anything to do this without holding on to the railing just to stay upright and struggling with each step. When we fell in love, she was larger than life with a zest for living that drew us close to one another. So much has changed since then. Our lives have changed, our future has changed, our dreams have changed. We can not deny the affect MS has had on both of our lives.

     It is important to know that it is not just the person who has MS that suffers from this disease. It is everyone who makes up a person's family circle who are affected in some way. For me it is seeing my best friend slowly loose the ability to do the things she once could. It is the fact that we can not do many of the things we dreamed of doing as we grow old together. It is doing things by myself because my partner can not do them with me anymore. It is more time apart from one another as I struggle to try to maintain my sanity and fulfill some of my goals and dreams. Although this may be a selfish statement; sometimes I believe MS is worse for me than for Sara. Part of my life has been taken away as well and I am a healthy person capable of anything. I may not have symptoms, but I am affected in many other ways. I wish I could take a nice long walk with my wife, but that is no longer do-able. I wish I could still skydive with my wife like the days when we met, but that is no longer do-able. I wish I could water ski with my wife, but that is no longer do-able. I wish I could snow ski for an entire day in the mountains with my wife, but that is no longer do-able. I wish I could go on bike rides with my wife where we do not always have to take the tandem bike, but that is no longer do-able. The list go's on and on. I wish... I wish... I wish...

     Mostly, I wish that MS would not affect our relationship as much as it does. My love for Sara has not changed because of MS. These are the cards we were dealt and is the hand we must play, I can accept that. But sometimes I feel that Sara's anger for the disease gets taken out on me. People with MS need to have a way of venting this anger, that's understandable. But it is often the spouse that takes the brunt of this venting. This has always been a hard thing for me to accept. I am a glass half-full kind of guy always trying to find the positive in any given situation. Sara was this way when we met, but seems more of a glass half- empty kind of gal now that she has MS.

     There are certainly many physical stages of the disease and they can be very different for each person. But there are also mental stages of the disease as well. The first is denial. When first diagnosed with MS, people try to hide it from their family and friends. They don't want anyone to know because they have not accepted it themselves. The second is anger. No-one can get the MS diagnosis without feeling angry for why this has happened to them. The third and I believe the most important stage is acceptance. You can't move forward with your life until you accept the fact that MS is a part of it now and forever.

We are still in the anger stage.

     It is my belief that the sooner one can mentally get to the acceptance stage is when life can go on. MS is not like cancer. Few people die as a result of MS so there is much life to be lived after a diagnosis, just differently.

     All we can do is to take each day as it comes and try to make the most of every minute. We need to maintain a positive attitude always. MS stops people from moving, not living. We can always find things that we can do and know that many people are not as lucky as we are. Our friend Susie's death from Leukemia reminds us of how fragile life can be. No matter what is wrong, someone else always has it worse.

Mike

WE DO NOT CHOOSE TO BE BORN

WE DO NOT CHOOSE OUR PARENTS OR THE COUNTRY OF OUR BIRTH

WE DO NOT, MOST OF US, CHOOSE TO DIE; NOR DO WE CHOOSE THE TIME OR CONDITIONS OF OUR DEATH

WE DO NOT CHOOSE TO HAVE MULTIPLE SCLEROSIS, OR MANY OTHER INCURABLE DISEASES

BUT WITHIN ALL THIS CHOICELESSNESS

WE DO CHOOSE HOW WE SHALL LIVE OUR LIVES

CHOOSE WISELY