Life Can Change in a Matter of Days

When my children were in school, I returned to finish a graduate degree in Clinical Social Work. My education included an internship in counseling children and working at an outpatient clinic in Dallas. After all the studying and work, I had the career I wanted. I opened a private practice in 1994 where I was fortunate to be able to work with children and families with many types of issues.  I was well physically and I was working long hours, but I loved it. I have always been blessed with good health and have done what ever I set my mind to doing. But late in 2005, I began to feel tired, so I cut back on my hours, took yoga and joined a gym where I worked out and swam. I rested and we did some hiking trips around the U.S.

In October my husband and I went on a trip to Colorado where I contracted an upper respiratory virus.  It became worse and I went to my primary care physician who treated me with an antibiotic that caused an allergic reaction. So in my mind, it seemed logical, with my doctor’s advice, to get a flu vaccine.  It is not known if any of these variables contributed to what happened to me.

I just couldn’t shake this fatigue. On March 16, 2006, I was working with a child in play therapy and sitting on the floor.  My legs felt tingly like they had gone to sleep. I realized that I couldn’t get up off of the floor. I managed to pull myself into a chair and get to my car. I had no feeling from my knees to my feet.  It was surreal to walk, wobbly, and not feel the sidewalk under my feet. No pain yet. I went to bed and slept 12 hours, then woke with a urinary tract infection, back pain, and a feeling like my legs were leaden.

I went to the ER of a local hospital, where they examined me, did an MRI, and sent me home with no diagnosis other than a UTI.  I had an appointment already scheduled with my PCP for the following Monday.  By that time I was walking like Frankenstein and the pain was intense in my back and legs.  Both legs were numb and tingling from my feet to my pelvis. My doctor expedited an appointment with a neurologist, who sent me immediately through the ER of another hospital with the diagnosis of Idiopathic Transverse Myelitis, meaning that the cause was unknown.

I was admitted and worked up by many different specialists over a 7-day stay. After numerous tests, a lumbar puncture, and MRI’s, I was given IV steroids to reduce inflammation, and pain medication. I could walk short distances with a walker by the time I left.  So the journey into rehabilitation began.

I worked a few more days to say goodbye to my dear clients and refer them to another clinician. And then closed my office.  I knew that I could not function in the mental state caused by chronic pain, memory loss, side effects of medications, and depression. This was a huge loss, and the first of many over the years.

Since then, I have not progressed much beyond this stage. I try to exercise because I know it helps TM patients, but I have so much pain that it limits what I can do. I have found water aerobics to be less stressful. Trying to keep a positive attitude is both a challenge and a must for rehabilitation. It is also a gift for those who care for us. Depression is a large component of this illness; for me it can be described as being overly tuned into my body due to pain and stress, while disconnected mentally and emotionally due to medications, and the damage to my spinal cord at T-11. It is difficult to be compassionate to the needs of others when you are so focused internally. So I tend to tune out others due to difficulty concentrating and remembering. I have lost friends who don’t understand. Colleagues have said this could be psychosomatic or stress based. As a mental health professional, I understand their stance. They are looking through the wrong end of the binoculars.

The struggle for me has been, and continues to be, that that there is no cure. My neurologist tells me “The damage is done, we just have to manage the symptoms”. I cannot accept that my life is irrevocably changed, and that there is nothing that can be done. I will continue to hope that there will be a therapy that will help reverse the damage to the spinal cord and that all of those who have had to face the “new normal”, will be normal again. In the meantime, we can offer each other our experiences and compassion that comes with knowing TM intimately. I have met several TM’ers who share very similar stories.  It really does help to know you are not alone.

~ Kelly McCurdy