I am living in the land of Nowhere and it is very frightening. Many years ago, when my two boys were very young, I took them on a car trip to Great Adventure, in NJ. Now anyone who knows me well understands that driving anyplace new is highly traumatic since I have literally no sense of direction. This of course was in the days before GPS technology and cell phones, so I had to rely on actual written instructions and directional skills from my sons too. Miraculously we arrived at Great Adventure uneventfully and met up with my then sister-in-law and her kids. Throughout the entire day, I was extremely anxious about the drive home, worrying that I would get lost (a huge phobia I have). By the time we said our good-byes, it was dark, making it even harder to navigate. Sure enough we found ourselves in a lonely, dark wooded area, with no visible signs, going around and around in circles. My poor children had to endure the increasing panic that engulfed me each time we found ourselves back to the beginning. After many desperate attempts to extract myself from that never-ending merry-go-round, I blurted out that we were officially in “Nowheresville.” At the time, the kids actually thought that was very funny, and it makes me laugh now, but at the time, I was terror-stricken. Now so many years later, I still sometimes get the feeling that I am in “Nowheresville”, sometimes known as “Loserville” or “Lonelyville”, depending on my specific state of mind on that particular day. When I was officially employed and doing “important” work, I didn’t have time to feel like I lived in “Nowheresville.” But now that I am on my own it is an effort to find a reason to “keep on keeping on” sometimes, especially in the morning. I constantly fill my life with all sorts of creative endeavors such as writing, photography classes, blog sites, social media, which creates a sense of peacefulness and purpose for a while, but it never lasts. Years ago I wrote in my journal that the amount of times I felt “good” and “peaceful” was so little that I actually could count them on my fingers, and I think that still holds true to this day. I live in the land of Nowhere, fleeing from the feeling that I am becoming more and more invisible as I get older, that I am alone, that I am becoming less valuable than I used to be, less relevant. Being creative and busy are good things when done for the right reasons. But, in reality, I am still seeking the praise, recognition, and love I never received as a child by filling my life with everything, when I am really running away from my demons. It’s human nature to not remember where we came from and to “forget” what life was like. When my life was a living hell with my medical issues and my son’s homelessness, I prayed and prayed to God to help me, and when my prayers were answered in the form of knowledge (about my spinal tumor) and surgery, I was literally glowing with happiness and filled with gratitude. But, almost two years later, I am feeling LOST again and I don’t know why. Life is a journey, and I know that my wild ride was not in vain because, although painful, I grew as a person. Human beings need to grow to thrive and I am doing just that, but sometimes maybe I need to just stand still and enjoy what I have NOW, rather than looking for the next thing, and the next thing. Maybe I need to just stand still and feel God’s grace.
Every so often, I find myself getting impatient with someone ambling across the street with a cane. It’s so easy to forget that less than a year and a half ago, that was me. Sometimes when I quickly get up from a seat, and stride very briskly to the other side of the room for something, I find it amazing. Unlike most people who are not impaired, I am acutely aware of how well I simply “walk” and never take it for granted. I know that just plain “walking” without losing balance, fear of falling, or having to hang onto the walls is a gift. Sometimes I become aware that my feet, belly, legs, and back are no longer numb and tingling. I look at my right leg, which was withered as if I had polio, and see a nice, plump muscular leg again. I know that not having my crutch parked beside my bed for help in the middle of the night, is something I never thought I would experience again. Just like anything, it is human nature to not appreciate what you have until you lose it. Things that I thought I would never do again, such as running (a run/walk now) I am doing. I was a prisoner to my disability, never being able to just pick up and go, and I will be forever grateful for that miracle bestowed upon me. OK, if I had not persevered and kept insisting that something was wrong with me, and not just accepted a life of an invalid, I would not have had that “miracle.” So, it all went together and my tenacity was in itself, divine intervention, I believe. When I remember to practice gratitude and appreciation for how I was literally given my life back from the brink, I have a better day. When I focus on the same old petty, annoying, neurotic insecurities (which I will probably never totally lose) I am lost. I know that I have been given a daily reprieve and there are no guarantees in life, but for now, my life is infinitely better than it was, and I cannot forget that.
As time goes by I am forgetting to be grateful. I have been in a state of flux and depression lately because I am putting too much emphasis on getting accolades. I wrote Being Your Own Cheerleader, but I have been having a hard time following my own advice. I think every human being needs some sort of recognition for what they do, even for seemingly small things. It is amazing how one kind or positive remark from someone can do wonders to carry me for a few days. But it just seems that when I write and write, and have no comments, I begin to doubt myself and all those negative tapes start playing in my head, that I am not good enough, and what’s the point, etc. Then my friend Jane, who has been in and out of the hospital since November, with complications of MS, calls and the amount of gratitude I feel comes flooding back. That is when I remember that back in March 2013, I was literally given another chance at life. Immediately after that surgery I was actually happy, because I didn’t take for granted simple things such as walking across the room without a cane. Now, over thirteen months later, I sometimes forget how horrific my life was and how amazing my life is now. I could compare myself to other people who have more money, a relationship, more friends, and feel insecure and small. But, when I compare myself to my friend who struggles with simple tasks such as just walking, cleaning, loss of autonomy, having to depend on people to drive her to appointments, I am filled with gratitude. When I think along those lines, and don’t let myself drift back into negativity, my day and life goes better.
Miracles can come in all shapes and sizes; the trick is recognizing them. I don’t think that miracles have to be huge–sometimes they happen very quietly, and would go unnoticed by anyone else other than the recipient. An example of an amazing miracle for me was, after months of physical deterioration and suicidal hopelessness, the culprit of my symptoms was finally discovered. The ensuing surgery and recovery over the past year has been nothing short of miraculous. Just walking, having balance, working out vigorously, driving without fear, are activities that others take for granted, but I am in awe. Sometimes miracles come in baby steps. After being diagnosed with a potentially terminal illness, my wonderful friend Janet was at the point of giving up. She was having chemotherapy to hopefully prepare her for a possible stem cell transplant, but her blood counts were not good. But shortly afterward, she called me with great news–it seems her blast counts had dropped to the right level, clearing the way for her stem cell transplant. Now, about two months post transplant, she is doing amazingly well with her new immune system (acquired from her formally estranged brother). It has been a long haul but if that is not a miracle, then I don’t know what is. My friend Jane, who has MS, has been suffering from swollen feet for four months, which was a big mystery to her many doctors. She finally put the puzzle together and learned from the pharmacist that a drug she was taking (which she didn’t even need) was the cause. The swelling is abating gradually, which is a real miracle. If you look around you will see miracles in your every day life. But recognizing them when they are not the burning bush variety doesn’t always happen.
March 18, 2013
It is amazing how twelve days can make such a world of difference. I am no longer getting home care because I am so much better and driving too. So many people take just plain walking for granted, and so did I, until I couldn’t. This whole hellish 6 months has actually given me a new understanding of people with disabilities. It has taught me to not take anything—even something as simple as walking—for granted anymore. I know that there is a finite period of time on this earth and I MUST live it to the fullest. I have to just conclude that this is a miracle of God that was bestowed on me and that there is a lesson to be learned. I have started back to the gym just to walk on the track (because there are handrails, just in case; I still get nervous when walking) and have also started doing some of the P.T. exercises I was doing with the therapist after my last surgery. I am very, very, determined to get back as much function as I can. At this rate, I think I will be good in a few months and will continue to improve more and more as time goes on. I finally have HOPE, something I have not had in 4 months. Every day when I can easily maneuver around without losing my balance, I am amazed, and who would’ve thought that something so seemingly simple could give me such joy? When I see people that knew me before this latest surgery, they say I am different, almost glowing. I feel that I have a shot at a life now, but I will not forget the months I spent as disabled, hobbling around with a cane, ready to fall over at the drop of a hat, not being able to lift my own leg into the car, being a menace on the road because my leg was sometimes unresponsive. I drove my car again last Wednesday and at first I was not used to the sensation of actually having power in my leg. But, after a few minutes, I got the hang of it and reveled in the feeling that I could stop perfectly whenever I wanted to. Before this surgery, I drove with my heart in my throat because sometimes my car would lurch forward when I didn’t expect it, almost hitting the car in front of me. I had so many close calls that I was thinking of not driving anymore, but I just vowed to be extra, extra, careful, putting my foot on the brake way before I had to and pressing hard. But, even then, it was such an effort to just lift my leg from the gas to the brake and back again because of extreme weakness. It is a blessing to just be able to drive normally again. It is almost as if I have awoken from a coma and now have to learn to walk normally again. My right leg was so atrophied from lack of proper use of the muscle but it is already starting to get some of the tone back. I am so grateful that words cannot even describe it. I find myself smiling more at people now and that in itself is miraculous.