By Ellen Lenox Smith.
What a gift it is to wake up to a day when your body is cooperating! Everything seems brighter, safer and with more meaning, hope and positive energy. In fact, I find it so exciting that I tend to rapidly let my mind believe that this is my life returning back to more normalcy. I bask in the moment and unfortunately, my mind often attempts to trick me into feeling that this feeling may be permanent. Patients with chronic conditions are, by the very nature of their situation, forced to keep the dreams of normalcy in check. I feel positive, think about the future and dreams………and then I awaken to the next day, slipping backwards again and my heart breaks. Those with chronic painful and or debilitating conditions must find tools to overcome the reality of the emotional suffering which accompanies the disappointment of relapse or this very dynamic will serve to seriously compromise their health even further.
Living with chronic pain is such a challenge. First I find myself trying to figure out initially why this is happening to me to eventually learning to accept that this is the life I have to learn to live with. Along with accepting this new life you have to somehow find peace with having to let go of those things that are just not possible anymore. Having struggled with life in a wheelchair for four years was a huge challenge. Despite making progress, I still am not walking on my own property and even walking into a store without the bones dislocating or subluxating. Strangely, there have been times that I almost wished I had never known being able to walk. Losing function of your body can be so difficult. I believe that adapting to the loss of such critical functions like walking, may be more challenging than never having the experience and joy of those natural capacities. I am sure that sounds terrible to say, but it was where my emotions drifted at the time. And then, you also have to confront judgement which often accompanies the life experience of so many of us living with invisible conditions such as chronic pain. I think we have all had to face family, friends and the medical community failing to comprehend the notion that while many patients may appear healthy, this is not to be equated with a patients suffering from serious and severe symptoms. Thus, many patients with chronic conditions fail to receive the understanding and support so critical to their well being.
Life tends to shrink when you have to struggle with medical issues. Your world, which initially seemed expansive with dreams of adventure, travel and possible opportunities, becomes limited to your immediate environment. So much is given up and no longer going to be. But we also have to learn how to break down the emotional and physical barriers which seem to be closing in and find a way to live life and feel purpose despite the losses.
Another thing that strikes me is how insignificant things from my earlier life seem now. For instance, although I never dreamed about having a lot of money, I did want enough to keep up with bills and life in general. But now, money couldn’t buy what I need, a body without two incurable conditions. Also, I don’t care about styles, material things, trips, even vacations and would trade all that for just living without pain and physical deterioration. The chronic patients capacity to accept the loss of many of the most basic and joyful human experiences, as in my case, the privilege of holding my grandchildren, remains the patients greatest challenge. Once the emotions of loss are better managed, the chronic patient must move on to adaptation to his or her new work, in order to move forward.
Again, I always have to remind myself of all the family, friends and acquaintances we have met that are dealing with so much more. You tend to get stuck at first with the notion that this is just about you but when we open our eyes and look around, we all have something to cope with that they wish they didn’t have to address. My husband and I decided that to learn how to live with EDS in our lives, that we needed to reach out and try to help others and pass forward anything that have learned so that the burden on the next person might be diminished. I know with my two conditions, ehlers-danlos syndrome and sarcoidosis, along with now being sixty-eight years old, that my mission is to help others and dream that someday, the next generation will not have to experience what many of us deal with. Weather it is issues of difficulty obtaining medication needed, finding funding to sustain our lives with health issues, or even knowing that there is a cure to hold on to, I hope that these concerns and struggles will lessen for those after me.
So, have you ever wondered how to duplicate that good day? I sure have, by running through my mind over and over. I review what I ate, how I moved, what I did, etc. to try to figure out if there was someway I could repeat the same positive results. I haven’t achieved that goal yet. But I do keep in mind things that I did differently on that bad day that might have triggered the negative change. Maybe this can never be figured out but instead, we need to focus on whatever good in our lives we do have. Again, to just wake up to another day makes me feel grateful, despite the daily struggles, sometimes isolation, and heartbreak. At least we have this next day to live.
May life be kind to you!
Ellen Lenox Smith is an activist for the expansion of medical cannabis to treat chronic pain and is also a Board Member of the US Pain Foundation. Her opinions are her own and don’t necessarily reflect US Pain Foundation or other organizations she works with.