|Aliyah in 2002, one year before diagnosis|
Q: When you were diagnosed with MS, what was your reaction? At what age were you diagnosed?
A: I was diagnosed in 2003 after I began to limp while on tour in Ireland with my interracial gospel choir from New Orleans. We were in Ireland to speak and sing about racism and sectarianism. It was only when my symptoms became visible that I was taken seriously. I had gone to many doctors for more than a decade being shrugged off as hypochondriacal at the very least and malingering at the very worst. In all fairness, these doctors felt helpless in the face of the subtle symptoms I initially presented.
While raising my children as, virtually, a single mother during my 30s, I felt like I was being chased by an invisible specter, as I silently prayed to be able to physically care for them before I was overcome by whatever was chasing me. It became obvious that I could not depend on the medical establishment to allay my fears. I was terrified, but I came to realize that my fears predated the symptoms and I began to understand that the level of healing I was to undergo had little to do with the physical symptoms.
Q: What is a typical day like for you? What activities do you enjoy most?
A: I have the dubious distinction of being described as the most disabled person my experienced physical therapist has ever met who lives alone; and he had worked in nursing homes during his early career. I am virtually quadriplegic with minimal use of one wrist and my neck. I am fiercely committed to my independence after having been treated in two different nursing homes on a short-term basis to receive IV antibiotics. I am alone nineteen hours a day, with caregivers the remaining five. Having been a competitive athlete, enjoying many adventures in my life, I have finally come to see my every day challenges as an adventure, constantly requiring strategizing as this illness steadily progresses. After recognizing that maintaining skin health was vitally important to maintaining my autonomy, I created a diet and exercise program to support this end. I have designed my diet to feed the mitochondria of my cells, to balance the Omega 3s and 6s for optimal cellular metabolism. I juice twice a day and have green smoothies.
I stand every morning for one hour in a standing frame for weight bearing exercise. I later secured a Theracycle, a motorized stationary bicycle, and with the help of my physical therapist, who has become my friend, added that to my rigorous regime. When I added a second day of bicycling per week, my decubitus of many years, healed. Bicycling has increased my circulation, stretched tendons and ligaments and freed up a frozen shoulder. Realize that this form of multiple sclerosis I seem to have is extremely progressive. Most people with MS won't have to have such a rigorous regime.
In addition to the physical regime, I am fortunate enough to live in a community where there is much intimacy and passion for self-improvement. I participate in fifteen groups per month, including nonviolent communication groups, psychotherapy groups which I facilitate via Skype, my caregiving group where we are creating a new paradigm for caregiving, which I write about in my blog/book, and various other gatherings.
I have been a practicing psychotherapist for over twenty-five years. No longer being able to continue running a horse farm and competing in dressage, I began oil painting as a hobby. When I no longer had the fine motor skills for painting, I began designing and fabricating jewelry. (See my site on ETSY.) When I could no longer use the pliers, I began to write my blog. I don't know how I found Dragon Dictate many years ago. I seemed to have stumbled over it “accidentally” as I have found many tools. One of my blogs that describes this more clearly is titled “Mr. Magoo and other Spiritual Teachers.” I seem to move blindly and something in the universe appears to support my well-being and creativity.
A: I use Dragon Dictate for controlling my computer and composing my blog. I can only tap to click my trackpad on my MacBook Pro, so this software keeps me functional and relevant. The most important attributes I have for maintaining my quality of life are my fierce determination and my sense of humor. I can thank my father for the latter. It seems to help lighten up other people when they see that I am light about my life circumstances. (More on this later.)
Q: You are an author of a recently published book. Can you tell us about your book, and how we can purchase it?
A: After writing my blog for a number of years and getting feedback from people from seven different continents, I decided to transform the blog into a book that was published a couple of months ago. You can read about my book and what I call my “curriculum” on the site http://meetmebytheriver.net/. I originally published it in color and later added a black-and-white version to make it more accessible, pricewise. The former is more vibrant, but I understand people's constraints. There is also a link to my blog. Warning, it is not for the faint of heart. I take my curriculum very seriously when I wander into places in myself that were unavailable before this illness. I subscribe to what Viktor Frankl accomplished, in order to integrate his experience watching his family die in concentration camps, attributing a greater meaning to catastrophic circumstances. When I realized that the mainstream medical establishment was not going to be of help to me with this progressive form of multiple sclerosis, I knew I had to find a greater meaning and purpose for these circumstances.
It doesn't matter what the catalyst is, a relationship breakup or a catastrophic event; both are invitations for the soul's growth. Feeling victimized by the catalyst for an extended period of time renders one powerless. Ironically, as a quadriplegic, I feel more powerful than when I was winning blue ribbons during competitions.
Q: You are a trained psychotherapist. Has this training helped you cope with your diagnosis? What advice would you give to other patients who are struggling?
A: I find that my years of working intimately with others was a prerequisite for this greater work, a life of service and this illness has accelerated that mission. As I have deepened, I have been able to help others deepen, so that they could perceive and interpret their internal communication beneath the symptoms that is often blocked by fear and self-judgment. It is a joy to be able to hear one's own inner guidance. When self-love has been strengthened, liberation from suffering and growth is assured. I try to demonstrate this process in my blog through honesty and vulnerability. Our world is yearning for this healing. I believe that we are the canaries in the coal mine.
Q: Any other thoughts or information you would like to give?
A: I believe that people who have taken on this curriculum are courageous souls. No wimps can weather these circumstances. In my opinion, merely coping with this illness is the bare minimum of possibilities. When my symptoms first began, I was literally scared to death. I lost forty pounds and had to choose whether I was going to live or die. I needed to make a choice. as I said previously, this illness is not for the faint of heart. Beyond your own pain, just looking at the pain on our loved one's faces is enough to overwhelm the mightiest of egos. And I believe that that is often the point, to go beyond our comfort zones and limitations.
We cannot just cope, we can thrive and realize our greatest potential, once we surrender to the higher teachings. When I chose to live with this illness, I chose to demonstrate honesty and vulnerability to my children and my clients, leaving a legacy that would demonstrate grace and make the world a better place.
Thank you and your readers for contributing to that end.
|Aliyah with her daughter, Casey and Son, Jordan|
Aliyah's book site: http://meetmebytheriver.net/
Aliyah's blog: http://aliyahonline.wordpress.com/
Aliyah's jewelry: https://www.etsy.com/shop/wildernesswomyndesig