The Wilsons'Story

I am writing this story for my husband who has Lyme Disease but is unable to get his thoughts together and type them. For several years we went through symptom after symptom, doctor after doctor, until finally after my husband was almost deaf a doctor decided to test him for Lyme Disease. Oh my, it came back positive. Now what to do?

The next day my husband was hospitalized in critical condition with double pneumonia and was not expected to live. Our prayers were answered and he pulled through but could not hear a thing. Not one thing. But he was alive. So off we went to Johns Hopkins Hospital in Baltimore because we had heard that it was one of the best. He was again tested for Lyme and the results came back negative. Was it possible that this dreadful disease was gone???

The only good thing we did find out from this visit was about a cochlear implant that he could get to aid him in hearing aging. Oh by the way we are from Wilmington, NC where not many doctors have even heard about Lyme Disease. After this bout with the pneumonia, we had to find another doctor. We went to doctor after doctor trying to find just one who would even try to help us. One doctor wouldn't see him because he had Medicare, another didn't take our insurance, but the one that really blew our minds was the one who told him to get out of his office when he heard the word "Lyme."

He was rude and made it very clear that my husband was not welcomed at his practice. So through the books we went again and finally found a good doctor, one who did his internship at Stonybrook but did not specialize in Lyme disease. That was almost 2 years ago. Even though the previous doctors did not treat my husband with the right antibiotics and the Lyme disease has now affected him neurologically, this doctor has done wonders for him.

He has given him 3 weeks of IV antibiotics which he told us may or may not help but atleast it should stop the disease from doing more damage. We have seen a little improvement and are very grateful for this. I guess many of you know what it feels like to watch someone you have spent most of your life with just waste away. My husband was a very active person. He was a certified BMW and GM mechanic, one of the best in our town, and now some days he can't even remember his middle name.

His back hurts, his legs cramp up and swell up so bad they split open. He has to take pain medicine on a daily basis to even be able to take the pain that he is going through. There is no medicine for the emotional pain though. At times he thought he was going crazy and still does some days. But at least now he knows why. Even though we never found a tick or saw a rash, Lyme disease has taken over his body; has taken over our life.

We have no friends anymore. No one wants to put up with someone who has a hard time participating in a conversation because he is hearing impaired, or someone who asks alot of questions because he doesn't understand what is going on around him. We can't go to the movies because he can't hear; we can't take those walks along the beach like we used to because the pain in his legs won't allow us to. Even our families don't have much to do with us.

They are too busy with their own lives to think about someone who is sick, or help me with his care. But we have each other and our fellow Lymies. It has meant alot to us to have people who know and understand. We want to start a support group in our area and hope to get started soon. Maybe we can help by letting people around us know how bad this little tick can make a person feel, how it can ruin their lives. Hopefully, this will help both of us.

My husband will have other people to talk to and help him through the emotional part and I will be able to talk to other people who are caregivers for someone who is this sick. This is hard on me. I can only imagine how my husband feels.

Michael and Susan Wilson

Castle Hayne, NC

Postcript

This is dedicated to my husband Michael Wilson, who died of complications from Lyme Disease on January 25, 1999. He and I wrote the above story for the Quilt before he died, but I didn't get to submit it until after his death. This one is written by me, a caretaker of a Lyme Disease sufferer.

To anyone out there who is taking care of someone with this disease, I know what pain you are feeling. I watched my husband of 28 years go from a strong healthy man to a man who couldn't even remember his name, some days. I watched him suffer each day, but he never complained. He was just grateful for another day. I would get aggravated at him because he couldn't go places with me and he just wasn't that man I married, but as I learned more about this disease I found out he couldn't help it.

He didn''t have the energy to even get out of bed some days. I miss him so much now. Some days I don't know how I'm going to go on. I would give anything to have him back with me now even though I know he is in a better place. He doesn't suffer anymore and for this I am happy but life with out him is just so empty.

To all of you out there -- we need to find a cure. This disease destroys people, marriages and families. We need to find doctors who aren't afraid to diagnose Lyme Disease and treat it. That is what happened to my husband. By the time he found a doctor who was willing to listen to him and take the time to help him, it was too late. Now I don't have a husband, my children don't have their father, and my grandson doesn't have his Pop pa. We need to get the word out to everyone that we need help with this dreadful disease.

This is happening to too many people and it's not being taken as seriously as other diseases, even though it is just as serious. Those of you who are caretakers of Lyme Disease patients, be patient with them. They can't help it. They are very sick people. They have this disease that is taking over their brains and bodies and doing things to them that they just can't control. Be grateful for each day. Hug them, tell them you love them and most of all, be there for them when they need you. It's hard, I know it is. I met some nice people in the Lyme chats. Sometimes you just need to know that there is someone out there for you to let off steam. If any of you need to talk, please feel free to e-mail me at any time. I will help you as much as I can.

I hope my story helps some of you out there. Be grateful that you still have your loved one with you. When the times get rough, just remember they are sick. Love them while you still can and remember just because they are sick doesn't mean they don't love you. They really do.

I would like to thank all of you for being there when I needed someone to talk to, especially you Pat. It was friends like you that helped us get through this. I'm not going to stop helping with the fight to find a cure for Lyme Disease. Mike would not want me to give up. He would want me to help as much as I could, to help find a cure for this disease that destroyed him. So if there is anything I can do to help, please let me know. I am still here for anyone who needs me.

Thanks again to all of you.

Susan Wilson

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