Out of the Darkness: Life with Chronic Illness
Many readers are coming from the same place: life with chronic illness. We can all relate to the ongoing debates in our minds, "Should I have done more?, Should we go to yet another specialist? Is this next opinion the one that counts as 'too many'? Am I crazy for wanting answers?" We struggle with these ongoing thoughts and wonder if we will ever have what we deem a "normal life". As I often say, none of us live in that elusive land called "Perfect". Often times, we find that our world is tumbling out of control. Stress, hospitalizations, trying to balance school, work and play wreak havoc on our lives. You might have already been there. I have already been there before......that dark recess of gloom. Thankfully, I've always managed to make my way out of the darkness and back into the light.
Climbing out of the dark place we sometimes find ourselves in can be very difficult. Once we get out of the dark pit, it can also be difficult not to backslide right into that same dark place we try so desperately to avoid. Life with chronic illness is a challenge. Not only do we have the challenges all other parents on the planet face, we also have to fit in extra medical appointments and procedures for our children. If your family is like mine, you are also performing various medical procedures at home on a daily basis. Lastly, let us not forget the insurance and billing stresses along with the stress of financial responsibility. It is enough to push anyone over the edge.
So, what can one do to keep from falling down the slippery slope into the darkness? I certainly do not have all of the answers, but I do have a few ideas that have made a difference in my own life. The one thing that has made the biggest difference in my life has been to pay attention to my own spiritual needs. Most of us do an okay job of taking care of our physical needs, but more often than not, tend to neglect our spiritual needs.
When my boys were much younger, we were living in San Antonio, Texas. Living there afforded me the opportunity I have not had in other places we have lived. I was able to go to a twenty-four hour Adoration chapel at our own parish church. It was perfect. I could go alone to pray once the boys were asleep. Sometimes, a close friend of mine would come with me. We would sit in the chapel from midnight to until two in the morning. It was a place of serenity and calm. Something rarely achieved in a household with three toddlers bouncing around! In this place, I could pray and just listen to what God was trying to say to me. Another plus, as I often felt I missed what God was trying to tell me amid all of the, "Mom I want, mom I need, mom I've got to haves" of each day.
Once we moved, it became increasingly harder to find the quiet space I needed for prayer and meditation. Even now with older children, I still struggle with finding a quiet place to pray. One place that usually works for me is the bathroom. Dad can handle the kids and I lock myself in for an hour long bath. Soothes tthe tense muscles and gives my brain a rest...even with the occasional knock on the door, "Mom, I need...." as dad grabs them away. I use this time to read books on the lives of the saints, pray or just sit in silence. Reading about the lives of the saints is something I find particularly helpful as many saints struggled with darkness. St. John of the Cross and his Dark Night of a Soul is something I have found particularly helpful. Obviously, I am Catholic, but you can use these techniques to fit your own spirtuality.
One way in which I take care of my physical and spiritual needs at the same time is by taking a long walk. Many years ago, my father-in-law gave me money for Christmas and I bought the one thing that I claim has saved my sanity a number of times over. I bought an iPod! Not only do I use it when we are sitting in waiting rooms and on long medical trips, I can also walk and listen to music, the rosary, audio books or short meditations. It has truly been a life saver for me. Walking relieves stress and helps build a physically strong body. Of course, it is also nice to be alone and free for a short time.
During a particularly stressful period recently, I was so riddled with anxiety that I started searching for natural ways to help relieve the physical pains it was causing. I came across this amazing tool kit by Dr. Andrew Weil, a Harvard trained physician who is also an expert in integrative medicine. What I love about his tool kit is that he is very open an honest. He says in the workbook, "You don't have to give up--or take in--any religious beliefs in order to meditate. While many forms of meditation come from religious traditions (Eastern and Western), you can apply the basic principles and techniques regardless of your belief system." He focuses on breath control and relaxation techniques. As he states in his book, "Meditation is simply directed concentration and involves focusing on an object: the breath, a repeated word or phrase (known as a mantra), or mental image." I have integrated his techniques that have been proven to alleviate stress and the effects of stress into my own Catholic belief system. For my mantras, I pick quotes from saints or a passage from scripture. My mental images are usually scenes from the life of Christ taken from the mysteries of the rosary. Obviously, concentrating on breathing to lower anxiety and your heart rate is just that...concentrating on your breathing. I share this in hopes that some of you who have been afraid to try meditation and breath concentration to alleviate stress might give it a whirl once you find out you can make it fit your own belief system. Dr. Weil takes it one step at a time, beginning with breath work. I was amazed with the results. Just learning to inhale and exhale properly while paying attention to my breaths, I was able to lower my heart rate, relax and reduce the effects of stress on my body.
Sometimes, the darkness is unavoidable. Something that has helped me from hitting the bottom as I free fall, much like Alice in the dark rabbit hole, is having a support group of close friends. Friends who are dealing with the same chronic illness and know the intricacies of daily life with SDS, Mito and medical issues. Talking to others about my anxieties, fears and receiving feedback is a valuable asset. It lets me know that I am not alone in my thoughts and feelings, that what I am feeling is normal. These friends have been there to pick me up when I fall, and I have hopefully been there for them in return. If you do not have access to a local support group, you may want to consider joining an online support group.
I also find writing to be a creative outlet that helps me to get back on track and out of the darkness. While I am not very good about keeping a journal, it does help me from time to time. I may only have a few entries a year, but it is my journal, so who cares!? I also write articles for a few online sources. The feedback from readers has been very encouraging and helpful. Other outlets might include a blog, online journal or family website. Do not underestimate the power of sharing your journey with others. It can be something positive and powerful!
The last bit of advice I can offer is just to let it go. I do not mean to let the darkness overcome you completely, but for a brief moment, allow yourself into the darkness and feel what you need to feel. I truly believe denying oneself the opportunity to feel these normal emotions of fear, saddness, and grief, one is never able to heal and move on. Allow yourself to cry, scream or just be sad. Our support group recently discussed this very topic and we realized that many of us were able to let go while driving. It was a time and place that we were alone and did not have to worry about family members being upset by our display of emotion. Of course, when driving, one must pay attention to driving and may need to pull over if the "session" becomes too overwhelming. I have found myself sitting in the car in the church parking lot many times. It is a safe place to sit alone and it works for me.
We may not always be able to escape the darkness in our lives, but we can minimize the effects it has on our physical and spiritual well-being. The next time you find yourself slipping into a place you do not want to be, try focusing on your spiritual needs along with the other strategies listed hee and you might be pleasantly surprised to find the darkness disapears quickly.
** as I get this article added to my blog, I realize that I need to get Dr. Weil's kit back out.... I've been dealing with quite a bit of stress lately (thank you new insurance plan) and need to minimize the effects of the anxiety!!!