Climbing your Mountain

by Laura Zeller

Many of us have struggled for months to years in our search for our diagnosis. Once we receive a diagnosis, whether it is Cancer, HIV, or Lyme disease, the shock can be overwhelming. Fear is often our first reaction, and often times it does not subside quickly. How do you hold it together emotionally, while searching for a way to treat the disease?

People frequently ask me how I managed to beat Lyme disease and keep a positive attitude. I receive daily emails from sick people searching for reassurance and hope. Most of the people contact me after reading my Lyme disease story online, and want to know how they can get better too. I am not a doctor, nor do I claim to know what is right for these desperately ill people. So how do I help them? Well, I share my experience, and how I have gone on living happily while having chronic Lyme disease.

My family raised me to be independent and determined. I was a mountain climber, and I was familiar with challenges. For the thrill of adventure in the outdoors, I used to risk my life on purpose before I got sick. Rock climbers, whitewater kayakers and skydivers know what I am talking about. It is our choice to risk our lives to make our lives fuller and richer by living wild, and on the edge as an adrenaline junkie! During my darkest days, I remembered the lessons I learned while mountain climbing. Mountains are beautiful, almighty and powerful. Reaching the summit requires physical strength and mental perseverance. You cannot give up if you want to conquer the mountain's majesty.

My journey with Lyme disease taught me both patience and gratitude, while strengthening my already fierce and determined spirit. Although I am still alive, not having my dreams come true has been a death of sorts. My identity and my freedom were lost for a while. I learned that no matter how challenging mountains are, the hardest mountains to climb in life are invisible. My love for life kept me alive, and fighting for survival. It has been a long and tortured climb, although beautiful at the same time.

Depending on how sick you are and how long you have gone untreated, you need to prepare yourself emotionally for the long haul. Chronic illness will zap your strength, wipe you out, invade your life, ruin your schedules and routines, and truly test what you are made of. Be prepared for things to get worse before they get better.

In my case, Lyme disease changed my life, but I have come out of it stronger and wiser. Your attitude has to be tough, you cannot give up, and you have got to look out for yourself. Please do not act like a helpless victim and expect the doctors and nurses and loved ones to do everything for you. Become your own detective, and research your illness as much as possible so you will be able to communicate well with your chosen physician. You have to save yourself, and it is going to take a lot of heart and soul.

First, you must organize your materials, and arm yourself with information to educate your family and friends. Let them know how serious this disease is, and how you are going to need their support. Print out information on your disease and give it to your family and friends to read. Find a local or online support group, and feel free to ask questions. Get copies of all your medical tests, and keep the folder and health history current.

Chronic illness can result in a vicious cycle of disappointment, anger, grief, chronic stress, and demoralization. I thought of each of the previous stages as mountains I had to climb. Seeking psychological support may be a good idea if you are feeling lost and overwhelmed. Early in my journey with Lyme disease, scared and not knowing where to turn, I got a professional opinion.

Psychotherapy for me was a tool that would teach me the skills I needed to conquer my mountain, which at that time was fear. Frustrated by my limitations, and victimized by the medical community, I was desperate for a way to cope. The psychologist I saw told me it was normal to be scared, and that I was going through the normal stages of grief. Although never in denial, I did experience anger and depression. I was resentful of my body and the limitations of Lyme disease. My life felt empty because I could no longer do the things I loved.

Disabled and full of fear, I was desperate for a way to move on, and desperate to climb my mountain. In the end, my psychologist said something that would prove to be the answer I was looking for. My psychologist said “you must accept this disease as your friend, your companion, and be good to it, because it is a part of you.” Right there I knew I was finished seeking professional advice. What she said struck right to the core of who I was as a person. Lyme disease was not my friend, not my companion, nor was it or would it ever be a part of me! The tiny ticks invaded my body and the disease was trying to destroy my life and weaken my spirit. Why should I accept it as my friend?

Her statement fueled my anger, which I instinctively channeled into fierce determination. Although acceptance is a valid stage of grief, it knew it was a stage I would never believe in. My spirituality took over and I knew that I could never accept Lyme disease as my friend. In spirit, I was healthy and full of zest for life. Right then I realized that I already had the tools I needed to climb my mountain of fear. Lyme disease could not touch my spiritual side, nor could it invade my imagination.

My career and my passion for extreme sports were put on indefinite hold, yet I knew that this was a temporary situation. Nevertheless, my lifestyle changed significantly and I did indeed grieve for my former sense of self. These inner battles are very difficult to explain to others.

Often times I tell people to be prepared for your social life to change. In my case, most of my friends abandoned me when I got sick. As odd as it sounds, Lyme turned out to be a blessing in that respect. A true friend is one who walks in when the rest of the world walks out.

At one point, when I thought I was going to die, I wrote letters to all of my family and loved ones. Putting my deep feelings down on paper gave me inner peace, and control over a part of my life that had been missing. Luckily, I survived, but the desperation I felt is something that I will never forget.

Finding others in similar situations that can relate to what you are going through is essential. Most of my current friends have Lyme disease, and are the truest friends I could ever ask for. Reach out to others in the same situation, and remember that you always have something to offer, no matter how sick you are. You can radiate energy towards others, and demonstrate a positive attitude, even if you are confined to bed or a wheelchair. Remember that Lyme disease, or any chronic illness cannot take your heart or your spirit.

When struggling with a chronic illness, it is important to find activities to keep yourself occupied. If you are confined to bed, consider a laptop computer to connect to an online support group. Sedentary hobbies have been the key to keeping my own sanity. I discovered a love for low-key things like scrap booking, aquaria, and even crossword puzzles. Audio books are a nice solution for those of us who struggle with reading. Keep in mind that meditation and tranquil healing music can be a great help if you are confined to bed. My pets brought me great joy, and were constant companions in during my most frightening days.

Focusing on your spirituality can be an enormous comfort on a daily basis. Midway through my illness, I realized that I could be sick at home, or sick out doing something. Going on with your life as planned is important. Do not forget, you are still alive, and you still can do it if you try hard enough. Do not give up; it just is not part of the master plan.

Exercise is essential to getting better. You have to start slow, and rest in between, but it makes a huge difference in your stamina and immune function. It is extremely important to laugh as much as you can try to find the humor in your predicament. Plenty of other people are going through the same thing, and you must reach out for support. My best advice is to continue climbing your mountains, one at a time until you attain peace. Your mountain may be fear, or it may be the lack of support from loved ones. In either case, keep your spirit strong and nourish your determination.

Watching the magnificent sunrise on top of your mountain is well worth the long journey. Remember, if you have hope, you have everything.