Article on having to accept changes brought by chronic illness; it robs life's abilities.
I wouldn’t exactly say I am a stubborn person, not exactly, but I have never liked having to ask people for help with things that I considered my responsibility. Unfortunately, certain things in my life have made it necessary for me to reach out for assistance in ways that I would never have imagined. I have now reached a point where needing help is becoming even more necessary and even more difficult. Okay, so maybe I am a little stubborn.
If you read my earlier posts you know that I have lived with chronic pain for about 50 years and with diagnosed Multiple Sclerosis since the mid-1990's, undiagnosed even longer than that. Most of us have experienced pain of some sort and for some length of time, whether it is from injury, accident, post-surgical, or the symptom of another disease. Chronic pain is a little different than acute pain, which you know is going to be fixed or healed in some way or another — maybe a cast, surgery, or time. While chronic pain can vary in intensity, in my case it is always with me, always demanding I pay attention to it, and recently it has taken away my ability to stand up or walk.
Living with pain when I was younger was bothersome; yes it hurt, sometimes a lot, and I took all kinds of medications throughout most of my life in an attempt to be rid of the incessant pain. I had four spinal surgeries, including a fusion, and spent several months in my senior year of high school in a body cast. There were some funny incidents that took place while I was in the cast so look for the posting named “My Cast and Me.” I wasn’t prevented from experiencing everything, as some people in pain are; I went out with friends, succeeded in school, had boyfriends, and worked, I just did it while in pain. And I learned that you can tolerate a certain amount of pain if you accept that it will be worse at times, especially if you are very stressed or do more than you know you should.
If I went out one night or to a family wedding, let’s say, and I decided I wanted to dance and have fun, well I knew that the next day I was going to be in terrible pain. But I would often make the choice to accept the pain and have fun at that wedding because there were fewer and fewer times that I could have fun like that, why not take advantage of the times as they come up. Of course as I got older and the pain got worse I wasn’t able to make that choice as frequently because the pain would be intolerable and I had other responsibilities to take care of. I couldn’t just stay in bed, in pain, and tell myself it was worth it because I had a really nice time the evening before.
It wasn’t until after my third Lumbar Laminectomy, in 1974, that I had to start asking for more help and making some obvious changes in my life. I had gotten married, had a little girl and a year after the surgery my marriage ended, which left the financial and parenting responsibilities for my daughter with me. I had to go on Social Services (welfare) for a few years because I was unable to waitress anymore or do any of the other manual type work I used to do. And if I told you that this was a difficult process for me it would be an understatement at best. I was the first divorce in my family so in many places there was little understanding; and the day I went to the Social Service offices to fill out the Aid for Dependent Children Application, was what I was sure would be the worst day of my life and that process was the most difficult and embarrassing one I ever experienced.
I went back to school and got my undergraduate degree, which I didn’t have before I was married, and while starting my career in higher education administration I earned my Master’s Degree at night. I was extremely fortunate that I have a large and supportive family because without all of them I would never have been able to accomplish any of this, while also having numerous hospitalizations for pain management and treatments for my spine condition. I won’t go into them all here but I can assure you I experienced every treatment available in an effort to get control of my pain; one treatment, spinal manipulation under anesthesia, was banned shortly after I had it because it was found that the spine could too easily be broken during this procedure.
I have heard pain called many things over the years; illness, sickness, debilitating, and any other combination of words you can put together. The other day someone asked me to describe what I thought pain was. I could have given a lengthy answer but it was clear that was not what they were looking for. The examples they give me, like the ones above, were all short and to the point.
I thought about it for a few minutes and the bulb went off in my head. "Pain can perhaps best be described as thieves; something which over time has the ability and opportunity to steal:
Our ability to do many things that we once considered second nature,
Our ability to have fiscal stability,
Our ability to have personal relationships,
Our self-esteem and confidence,
Our ability to achieve and be recognized for good work,
Our ability to relax, have fun, and enjoy friends,
AND the ability to be the person we had worked so hard to become.
I have worked hard for many years to understand what I have had to put aside, what I can no longer do or achieve, and who I am now that these diseases have taken away some of the main aspects of who I am and who I want to be.
This website of Memoir Vignettes is written in my attempt to help anyone who is living in chronic pain or disabling illnesses or injuries to understand exactly what they are still able to do. Just because they have lost or had 'stolen' many of their abilities and goals, all is not over for them. . NO, we are or can still be important, active, successful, individuals that can achieve a lot and it is important that we recognize that. It is important to think about what you have achieved, what you are or can still be doing, achieve, and how you are going to go about doing that!
I hope you will read these Vignettes and take a few minutes here and there to think about how your own life would fit into the situation being discussed in that particular Vignette. And I hope you enjoy them and find value to them and to your life. Oh, and I hope you will leave comments about what you have read or about what you are doing in that area. I would love to hear your story.