| When I was diagnosed with Multiple Sclerosis in | | | | of disability is sparse, many thoughtful writers |
| the mid 1980's as a "diagnosis of exclusion" (see, | | | | have considered religion and spirituality to be |
| my illness had been mis-diagnosed for about 25 | | | | crucial factors in adjustment to disability. BUT, we |
| years prior to this initial "diagnosis") I became | | | | must be careful not to "blame" God, as I did, or |
| VERY angry with God. "Why me", I asked. Why | | | | to say that my disability is "God's Will, or |
| did I have to be the one you inflicted with this | | | | punishment for something that I did". Saying these |
| terrible disease? Why couldn't you let the Doctors | | | | things isn't taking responsibility for our lives and |
| conclusively diagnose the condition? Why did I | | | | figuring out how to live a better life by managing |
| have to keep pretending that the Doctors were | | | | symptoms. Instead, become reconnected with |
| mistaken, just so that I could live my day-to-day | | | | whatever spiritual process/religion that you find |
| life? | | | | speaks to you, and live in the present with all of |
| I was asking the wrong question, you see. Instead | | | | the gifts that you still have. Being affiliated with a |
| of asking "Why me, God?", I should have been | | | | specific religion can sometimes help those of us |
| asking, "Why NOT me, God?" See, I was trying | | | | with disabilities find comfort in times of isolation |
| to become the "before the diagnosis" me, and I | | | | and despair. |
| just could not do it. So, I went into denial, and | | | | While little research has been conducted on the |
| pretended that nothing was wrong. And, as | | | | influence of organized religion in the context of |
| anyone who is disabled, or who is living with a | | | | disability, studies on the general population have |
| chronic condition can tell you, living with a disability | | | | been positive. For example, a 28-year follow-up of |
| is hard enough without trying to become a pale | | | | thousands of people aged 18-65 years found that |
| image of who one might have been without the | | | | the individuals who attended at least weekly |
| disability, i.e., trying to fit into a world designed by | | | | religious services had lower rates of depression, |
| and for able-bodied individuals, most of whom are | | | | smoking, and alcohol use; they also tended to |
| equally dispirited. It took me quite a while (about | | | | have greater social support. Frequent attendees |
| 10 years, actually) to come to the conclusion that | | | | were more likely to have engaged in other |
| I needed to stop being in denial; I needed to | | | | healthy behaviors, including physical exercise. The |
| accept the condition, learn how to manage | | | | effect on survival was good after other factors |
| symptoms, and get on with a quality life. Indeed, I | | | | were taken into consideration - their risk of death |
| needed to ask, "Why not me God!" For living in | | | | was reduced by 34%. |
| denial meant that the ILLNESS DEFINED ME; I | | | | When disability is integrated as another dimension |
| was very unhappy; I was seperated from my | | | | of living, spiritual growth can take place. Please |
| spirituality; I was alone; and, I contributed to | | | | reread this red phrase again. It talks about |
| disruptive events in my life. | | | | integrating a disability or a chronic condition "as |
| It may sound corney, but I used my illness | | | | anothe dimension of living"! It means, taking back |
| disability experience as an opportunity to get in | | | | control of your life; actually "living" again, and |
| touch with the needs of my "true self". That is, I | | | | managing symptoms as part of every day life! |
| decided to use this opportunity to take back | | | | AND, believe me, this is not easy! If you have the |
| control over my life; to recommit to my | | | | opportunity to acquire the Disabilitykey |
| spirituality; to discover and live a quality life; and, | | | | Workbook, you will see that I use my actual |
| to keep replenishing my "well" of personal | | | | condition as an example for others to follow. |
| happiness and satisfaction by reaching out to | | | | Whenever I have to focus on my "Multiple |
| others in similar situations. I mean, who better to | | | | Sclerosis Symptom Impairment Matrix", I get |
| discuss about living with a chronic illness than | | | | depressed all over again. My brother felt bad |
| someone who does so on a daily basis, and not | | | | about asking me about his "condition" because he |
| just some Researcher? Who better to create a | | | | felt that it was NOTHING compared to what I |
| Workbook (found at to assist others obtain | | | | cope with (more about his question in further |
| disability insurances to which they are entitled than | | | | blogs). BUT, I only concentrate on the symptom |
| someone who used the process herself, and not | | | | process when I need to. Otherwise, I concentrate |
| just a theoretical social services person? Who | | | | on symptom management, and on daily living as |
| better to create a website and an online blog | | | | quality a life as I can. |
| where we of similar condition can chat with, and | | | | Integrating experiences of disability allows a |
| learn about extending our quality of life than | | | | person with a disability to recognize that suffering |
| someone practicing each and every day? | | | | and hurtful experiences are universal conditions. It |
| Does my spirituality help me in these endeavors? | | | | can be a time for you to discover untapped |
| You bet it does! Spirituality is a quality that goes | | | | resources; it can be a time where you decide that |
| beyond involvement in a religious organization. It is | | | | you DO HAVE TIME TO play with your |
| a more basic construct. The highest level of our | | | | grandchildren, or read that book you have been |
| development is affected by our ability to | | | | putting off, or research your grandparents as |
| appreciate the sacred in life; to live each day with | | | | they came to America long ago. |
| purpose, and to find a sense of meaning and | | | | Spirituality is a way for people with disabilities to |
| purpose for our lives. Spirituality invites each of us | | | | fulfill their potential and discover the possibilities |
| with disabilities and/or dealing with a chronic | | | | while learning to live with and integrate their |
| condition to live fully and in the present - in | | | | disability-related limitations and yet expand their |
| REALITY, the here and now. Not in denial, but in | | | | boundaries to experience the fullness of life. |
| control of our lives, learning about, managing, and | | | | As part of my Internet research for this blog, I |
| living each day in quality! | | | | found the following website entitled "Faithability |
| Research suggests that people, and in particular | | | | Religion, Spirituality and Disability Resources". You |
| persons with disability, depend on spirituality and | | | | can subscribe to the site, for free, and receive (I |
| religion as an important, if not primary, method of | | | | think - I haven't gotten anything yet) periodic |
| coping with physical health problems and life | | | | information. The site looked interesting, so here it |
| stress. Most research, however, has addressed | | | | is: |
| one's involvement in religion rather than spirituality. | | | | Once again, your comments, thoughts, and ideas |
| Although research about spirituality in the context | | | | on this and other blogs are welcomed! |