Lyme Disease and Chronic Lyme Disease are intertwined and can be very dangerous. Lyme Disease can often bring about many other difficulties with one health and it often affects other areas of a person’s life, as well. For Dr. Erica Kosal, Lyme Disease may have affected her husband, but it did not affect her spirits and her family’s perseverance.
By Dr. Erica Kosal
You hear people comment often enough that their spouse inspires them. I have always thought this was sweet to hear, and hoped that meant that the “right” people were married to one another. When probed further on the issue, you may hear such comments as “She keeps me grounded” or “He is such a great father.” Again, in a world too often dominated by negative stories, these connections are nice reminders that often times we do not have to look very far for inspiration.
Still, my inspiring husband, Jim Young, definitely has had more thrown at him over the past few years than many people have had tossed their way over their lifetimes, or quite frankly, ever. Even after being diagnosed with Lyme Disease, he inspires me because he endures, he believes, and by example, he teaches our children invaluable lessons. He has shown me that there is always something good in any situation, even if the situation is an awful one. He has shown me that there are more ways to show your love for someone than through the traditional routes. He has shown me that even when life is so unfair, you must hope for a better tomorrow and believe that it will be here in due time.
Attacked by Bacteria from Lyme Disease
Currently, my husband is on a ventilator most of the day. He had a tracheotomy two years ago when his diaphragm, after being attacked by bacteria from Lyme Disease, stopped working well. He had a feeding tube inserted at that time, too, as his 5’11” frame was down to only 120 lbs. One physician gave Jim six months to live, but we knew this was wrong. Jim was able to improve his breathing and strength to the point that he could be off the ventilator most of the day, working a full one, and then resting at night on the ventilator. He was working to wean himself off the ventilator about a year later when the flu struck, and then another ailment of some sort a few months later, and since that time he continues to struggle, unable to get back his positive momentum for any extended period of time.
Unfortunately with the Chronic Lyme Disease, Jim has ALS symptoms – his neurological and muscular systems have been hit hard and he could not physically work any longer. While on disability currently, he is working to gain strength, muscle, and breathing ability. Over this “recovery time,” Jim returned to the hospital with a punctured lung, followed by another visit a few months later due to pulmonary embolisms. Right now Jim struggles to breathe, stand, walk, or do any “normal routine” activities most of us take for granted.
Through all the struggle with this Lyme Disease, Jim is an amazing trooper. He has good days and bad days, but Jim will always get back to consider the positive, reflecting on the good, and being grateful for what we have. Two such gifts are our children. We have a 5-year old son and a 3-year old daughter. Although it is very difficult for Jim to interact with them, he tries when appropriate. The children love their daddy and life at our house is as normal as can be expected. The kids will run up to his room to say hello and are always greeted by a huge smile. Even when Jim is in pain or when he is exhausted from the Lyme Disease, his face lights up when the kids enter the room. Through his actions, Jim teaches our children what it means to persevere. He is teaching them to have compassion, to see all sides to a situation, and to believe all things are possible, even when they look grim. Jim is teaching our children to be resilient, a life skill that will serve them well in the future.
Beating the Mental Challenge While Fighting Lyme Disease
My husband continues to “stand” tall in spite of all the health bombs due to the Lyme Disease coming his way. My husband continues on and inspires me to do the same. He is propelled to move forward by our two young children and our belief that this is all temporary and that he will be healed. I am inspired to move forward for him, for our family, and to become a better person as a result of all this.
1. What have you accepted in your life that took time physically or mentally?
In a strange way, it took me a long time to believe that true belief in something can accomplish much. I always knew to believe in myself and work hard, but I didn’t quite get the totality of what belief really was. To believe in something totally and completely no matter what other people say or what test results may show and putting your faith that these things are just blips that will be gone soon was difficult for me. It is hard to truly believe that something is moving in one direction when at the time things are moving in the opposite direction. Still, I have learned this is precisely what needs to happen in order to take control of the situation and to start turning things around in that direction. Belief comes first, and then the reality.
2. What do you appreciate about yourself and within your life?
I am so grateful that I have many friends and family in my life that continue to amaze me with their love and kindness. I also know how lucky I am to have two very wonderful children who seem to be happy and “normal” considering all that has happened and is happening to them. I appreciate my husband’s continued resolve to get well and healthy. As for myself, I appreciate that I can juggle much and seem to be handling all these arrows coming at me with a smile. I am glad I can see the positives in the negatives, and know that this will benefit me and my family in the long run.
3. What is one of your most rewarding achievements in life? What goals do you still have?
My achievement is right now, it is the totality of my life. I love my family and take pride that we are resilience and happy in the moment. As for specifics, my most immediate goal is to get my husband well. There is a balance of love, support and nurturing coupled with the push and nudge needed to motivate Jim to work hard to get well. We focus on the fact that there must be a reason for all these horrible “health hell” years and think part of it lies in reaching out to other people and helping those who are also facing such adversity. My long-term goal is to help empower people to take control of their own lives in the way that they would like and beat adversity.
4. What is your not-so-perfect way? What imperfections and quirks create your Identity?
I sometimes move quickly because I feel I need to – there is so much to accomplish in one day and therefore at times, I don’t get to spend as much time as I would like with Jim or with my children. The benefit of this is that my children get to go to those birthday parties and I get to practice yoga (among other things), but it can make for some packed days. I know this too is normal for a mother of two small children and that helps me feel not as bad. I am sure that my kids would argue that I am quirky in and of itself with my silly songs, phrases and attention that I try to give them daily.
5. How would you complete the phrase “I Love My…?
I love my husband because he is a courageous man and he continues to give to others even when it is so difficult for him. I love my husband because the world is a better place because of him. I love my husband because I know there is a reason for all this craziness and I look forward to figuring out the beauty that will ultimately grow out from this gloomy period. I believe my healthy husband will be besides me at that time and we will be standing tall together.
Dr. Kosal is the blogger of Traveling Troubled Times, where she writes about her experiences with raising two small children, caring for her chronically ill husband, and juggling a full-time career as a professor. She and her husband also maintain a website, Bounce to Resilience, which can be found at http://www.bouncetoresilience.com. This site is designed to provide information and help to people experiencing extreme stress and adversity.