New Hampshire

When TM Changed my Life

My name is Suzanne McCutcheon and I would like to share my story with all of you.
The date was December 16th 2002 and my husband and I had just purchased our first home 3 ½ months before in Rochester NH, having both grown up in neighboring towns.  We lived a fairly simple life, having two children and one cat.  We both worked full time jobs to support our family. 

It was a Sunday evening and I went to the grocery store alone to shop for the week’s groceries.  I was walking through the grocery store and suddenly I had intense pain in both of my arms and I started to hunch over.  Fear filled me.  I spoke to someone I knew and told him that there was something wrong.  He laughed at me and said that I was just getting old and it’s what happens after you pass the age of 30.  I had heard this before but I knew that there was something terribly wrong.  I managed to finish the shopping and drove the 5 miles home at a speed of 20 mph. 

When I pulled into the driveway, I leaned on the horn until my husband came out.  I told him that something was wrong and he helped me into the house.  Having four nurses in my family and no health insurance, I decided to call my mother-in-law instead of going directly to the hospital.  She walked us through the steps to make sure that I wasn’t having a stroke.  As I spoke with her and got into my pajamas, I realized that my entire left side of my body, from my chest down, was extremely numb.  I told her that I was going to wait and see how I felt in the morning.  The thought of huge hospital bills frightened me.  I can say to all of you now that your health is worth more than that.  Not that anything would have been different for me, but I should’ve gone to the hospital right away. 

The next morning I woke and tried to get out of bed.  I fell to the floor and screamed for Jeff to come and help me.  We called a walk-in hospital and told them of my symptoms and they told us to get directly to the emergency room.  By this time I had lost the ability to walk.  My husband carried me into the emergency room.  After all the paperwork and lectures for not coming right away, I was placed in a room where doctors performed multiple tests on me, including blood work, an MRI and a spinal tap.  Having children didn’t hurt as badly as that spinal tap.  This left me with questions as well.  How could I feel so much pain inside if I couldn’t feel the touch of my hand on my skin?  But at this point, all I really wanted was to sleep.  I was put on IV steroids to help bring down any inflammation in my spine that may have been causing my paralysis.

A day or so later, my neurologist came into my room and informed me that I had had the flu 10 days prior, and for some reason my own immune system had attacked my self instead of just ridding me of the virus.  I thought back and counted the days and realized that he had the date exactly right when I hadn’t felt well and no one had believed me.  He diagnosed me with Transverse Myelitis, which took me months to remember.  I had never heard of such a thing but all other diseases were ruled out and I was told that besides my TM, I was perfectly healthy.

He informed me that he wanted to send me to a rehab hospital and I informed him that I had no insurance to cover such expenses.  They had to do for me what they could right there at the hospital.  I continued with the steroid treatment and pain pills, because the pain I felt inside of my legs was horrifying!  We began physical therapy immediately and I can still remember what it felt like to be able to wiggle my toes again for the first time.  We worked at different times throughout every day that I was in the hospital.  Finally, two days before Christmas, I was being sent home with medication and pill form steroids.  I would be going to physical therapy as an outpatient.  Eventually, I was put into an aqua program for therapy, which was one of the best things I have ever done for myself. 

With time I was able to give up my cane and I can walk on my own.  My body is far from the same as pre-tm.  I still have no outside feeling on my right side, from the chest down, from the middle of my stomach, to the middle of my back.  My right side, though, is extremely strong and I can feel a constant pain on the inside.  My left side is weak and my ankle doesn’t bend correctly when I walk.  I can’t really run or play sports as I could before, and I have to be extremely careful when walking down stairs.  My pain is worse in the winter, but is still there in the summer, as well.  My memory isn’t what it used to be and whether that is tm related or not, I probably will never know.  The steroids caused a weight gain that I have been fighting since, but I feel that this is the year that I will finally take it off.

My life changed on December 16th, 2002 and though I would never wish tm on anyone, I can honestly say that it has made me a better person.  It made me realize what is really important in this life and that is you and me.  Our own attitudes can be the difference in our lives.  I may never again be what I once was, but there is nothing “wrong” with who I am today.  I walk a little funny, have pain that isn’t “normal,” have numbness in my body and I can’t do all of the things I could do before.  All we can do is strive to be the best with what we have and to keep our attitudes as positive as we can.  There are moments when I look back with regret at what I have lost, but the friends I have gained and the thoughts that now fill my mind are far better than what they were pre-tm. 

No one knows if I will ever be 100% again, but absolute perfection never really was my thing anyway.  Imagine having to live up to that!  I will never stop trying to get better.  I still have those bills hanging over my head and no longer being able to work full time surely doesn’t help.  But life goes on and it goes on for all of us.  We may as well smile while we are here. 

I purchased this plaque after I got tm and I believe in it as much as I believe in breathing… “I get up.  I walk.  I fall down.  Meanwhile, I keep dancing.…”  

If I can help just one person deal with the hand they have been dealt, it is worth it.  I am hoping to start a local support group for fellow tm’ers living in New Hampshire.  I can be reached on line at cutch4@aol.com or by telephone at (603) 332-9380. 

Life is not measured by the number of breaths we take, but by the moments that take our breath away!

Life is not meant to be a journey to the grave, only to arrive in a pretty and preserved body, but to skid in broadside, thoroughly used up, proclaiming, “Wow!  What a ride!”

With Love,
Suzanne
McCutcheon