16 Nov From Inspired to Inspiring – Tara’s experience with Chronic Illness
My name is Tara, and I have Multiple Sclerosis.
My story is like so many others. I was fine until one day, I was not. I had just given birth to my second daughter, and I was taking my girls to the neighborhood park. During the walk, my leg fell asleep and started dragging. I used the stroller as a walker to get back home. Panic set in quickly. I immediately called my obstetrician and was told to give my body time to recover from giving birth. A few weeks later during a routine check-up, I mention that the symptoms had not subsided, and my medical rollercoaster began. My first stop was to my family doctor, who assured me nothing was wrong, I probably just had a pinched sciatic nerve. I started visiting a pain clinic 3 times a week and getting chiropractic care just as often. At one point, I even saw a hypnotherapist…hey, I was desperate. All the while, I was trying to act as normal as possible and balance family life with a new baby. The next couple of months were mixed with fear and confusion.
After hundreds of hours of research, I was pretty concerned that I had Multiple Sclerosis, and I was able to convince my family doctor to order a brain MRI. The results came back “normal”. I was so grateful that I didn’t have MS, but still very confused by my mystery symptoms. I continued to see doctors and have tests done, and was told again and again that I was overreacting; I was experiencing baby blues, and suffering from fatigue and anxiety. No doubt I was anxious! I was struggling to walk more than a block or two, and I had been in excellent physical condition before my daughter was born. Nothing made sense. I saw a psychiatrist twice. Both times I was told that I was not suffering from any type of mental condition, and that my feelings were normal for the situation. I knew this, but it was a comfort nevertheless.
I eventually wound up wearing a molded corset for 3 months at the suggestion of an orthopedist to correct a “spinal defect”. During those months, I had to hire help to care for my children as I was advised not to pick up my infant. I felt like I was a living a nightmare. After my 12 weeks were over in the brace and I had shown no improvement, the doctor recommended spinal fusion. I recommended a second opinion.
By this time, a year had passed, and my husband and I decided to fly to a large city to see a specialist, in hopes of getting some sort of diagnosis. After a brief exam, and a NASA style lumbar MRI, I was told that I was fine, I probably just a had a mild childbirth injury that would clear up on its own. The doctor added that “I should go home and take care of my kids and quit spending my time in doctor’s offices”. I was so embarrassed. I decided I really was losing my mind and went straight home to throw myself into gratitude journaling. I mean, thank goodness I was healthy! My leg still didn’t work properly, I was beginning to experience heat intolerance and tingling, but 10+ medical professionals could all be wrong, right?
I took several months off from seeing doctors. We decided to move our family, and relocated to a larger city out of state. I was trying really hard to look and act “normal”, but I was failing, and I began to need to offer an explanation to new people I was meeting. “Oh, that. I have a childbirth injury.” “Sorry I can’t walk over, my leg is weak.” Everything was getting worse and I was scared. It was time to see another neurologist.
This time, the story was very different. The lesions were seen on the original MRI that had been misread, and a new spinal MRI revealed extensive demyelinating disease activity. I did, in fact, have MS, and the 2 years without treatment had cost me severely. I didn’t cry like I thought I would, I was numb. I was so grateful to have an answer, to be able to start treatment, and hopefully get better. I was ready to stand strong, face my illness, and get my life back on track. I was ready to fight!
As the month’s drug on, I did not get better, but my disability worsened significantly. Everyday tasks became nearly impossible for me, and I began to depend more and more on mobility aids. I didn’t feel well, and I wasn’t getting out of the house much. Depression set in. I no longer felt like an “MS warrior”, I felt like a person destined to progressively wilt away physically, while my terrified mind remained sharp as a tack. I was scared to move and scared to stand still.
It took years to recover my confidence. I had to fully grieve the person I thought I would be and what I had lost. As the pain and shock subsided, I realized something pretty big: I am exactly who I was before, only much stronger. I started to seek out examples of people in my situation that weren’t just surviving, but thriving with MS and other chronic illnesses. I found it all so inspiring. It was time to live life again, and the opinions and judgment of others didn’t matter so much. I gave myself permission to be angry and frustrated with my new challenges, but not to succumb to them. The little voice inside me formerly silenced in fear was gaining confidence, and a lot of thoughts and feelings were beginning to seep out. Writing became a therapy for me.
I am learning to live my life under the circumstances that I have been dealt. Becoming comfortable with the new me has taken time, but I really like who she is. I am becoming the best version of myself, responding to life’s daily challenges with dignity, grace, and humor. I am strong again. I am living my best life, despite Multiple Sclerosis.
The grief of loss, disappointment, and disease can be disabling. With time, you can and will emerge a stronger, better version of yourself.