I went golfing after 3.5 Years

My name is Darlene Caterina, I’m 43 years old. On December 8th four years ago, I was paralyzed by Transverse Myelitis (TM).  When I think back, it all seems like a bad dream. I was a very active, fit, fun, healthy, hyper, sweet-spirited woman, so I ignored the scary symptoms that started a week before I was diagnosed with TM. The tops of my feet and back of my arms ached.  My legs became weak, and I just thought it was because I was on feet all day as a dialysis tech. On that Dec 8th day I woke up with a terrible headache, my PCP prescribed me Motrin 800.  After a few hours the headache began radiating down my chest and back I knew something was wrong.  I drove to the hospital I worked at. I vaguely remember having blood draws, then an EKG, after that I blacked out. I awoke the next morning in the hospital and attempted to get out of bed, every step I took became weaker and my legs were collapsing under me, I managed to drag myself back to the bed and called for a nurse.  Lying there paralyzed from my chest down I knew I had to call a family member and tell them where I was but I was too weak to talk, it was on the 3rd day when I finally was awake enough to call.

The neurologist had no idea what was wrong; he thought maybe viral meningitis even though the multiple tests were inconclusive.  To be on the safe side, I was on a high dose of antibiotics and steroids.  My uncle suggested to me, that I go to a bigger hospital. I was transferred around midnight to the University of Michigan. Within hours my team of doctors told me I had Transverse Myelitis. I was paralyzed from the chest down. My upper half was affected but not as badly, my hands were crippled like I had a stroke.  I had trouble breathing, my vision was blurry, and a side effect from the medication made me lose my hearing.  The plan of action was to continue the steroids and antibiotics; followed by more MRI’s, lumbar punctures, a picc line in my arm, physical therapy, occupational therapy and multiple medications.  When the steroids weren’t working they scheduled me to have 3 treatments of Plasmapheresis.  After every session I would have a terrible migraine. To counteract the migraines they prescribed me a high dose of a caffeine drip, which made my pulse go up to 130,.   I became so ill, that I refused any more drips.  I was scared but there was no time for babying me, they made me learn how to dress, wash, feed, drag and position the lower half of my body. Along with physical issues, I had internal damage to my bladder and bowels. Let’s just say how humbling, embarrassing, and devastating this is to a person, male, female, young or old.

Exactly a month from the date of my symptom onset, I moved my left big toe; through the weeks I could roll my ankles, and pull my legs together.  Along with recovery came pain, I tried to explain the pain as when a leg, arm, foot, falls asleep and the burning, prickling, and electricity feeling you get. I was told over and over “pain is good” – it means nerves are connecting. I was released a month later; however, I could not go home, as home was not up to code for a disabled person. I had to have a wheelchair ramp built. Thankfully a friend from church and his son came and built one.

When I arrived home, the first thing I asked for was to set my golf clubs out in my bedroom.  I had to learn how to live with my new lifeless body, inside and out.  I had family to help, but it was up to me to determine how my future was going to be. I did whatever I could by myself. Every day I had new challenges, new pain (I hated being in my skin), new obstacles, new friends, lost a lot of friends too.  Every day I fought to get better.  I was not going to stay in that wheelchair. Day after day year after year my clubs stared me in the face. On May 19, 2013 as scared as I was, I went out of my comfort zone and I went golfing!  Even though I didn’t golf well, I made sure I looked good doing it!

I am so excited to learn that Michigan is having a SRNA Walk-Run-N-Roll awareness and fundraising event! I want to do all that I can to help RAISE AWARENESS and tell the whole world about this devastating illness.

In life, people are stricken with many illnesses, such as cancer, ALS, or diabetes.  I believe that I was diagnosed with transverse myelitis for a reason – to help raise awareness, educate others, and find that cure!!  I hope you will join us in our campaign.

~ Darlene, 43 years old.  One of the organizers of the Michigan Walk-Run-N-Roll Awareness Campaign. Support her efforts to raise funds for the Awareness Campaign here. You can also register or start your own team on the campaign’s main page!