Heather Tetzlaff Smith

 “I have MS.” How many times have I said those words? How many different ways have I felt when I said it? And yet…I rarely say it anymore

It was sometime near the middle of October, 1998 when I received a call FROM the neurologist’s office.  Earlier that year I had become clumsy and was tripping over nothing and running into doorways as I entered and exited a room. A visit to my family doctor led to a referral to a neurologist which then led
to an MRI. Even in 1998 I was able to look online and had my suspicions.
The weekend after the MRI my family took a quick trip to Washington, DC and on the second day of walking about we were finally viewing the then new Korean War monument. It was there that I confirmed to myself that I most likely was being challenged by Multiple Sclerosis.
I suddenly stopped and felt like my legs just would not go anymore. In retrospect, this was an amazing and poetic moment. There I was, stopped, viewing a field of statue soldiers who were posed in motion and yet were forever in stone and would never move on their own.

In that moment of not being able to take one more step I was also frozen in time as a barrage of thoughts ran wild in my head. “What is going on?” “I know I am out of shape…but this is crazy.” “I just need to make it to that bench so I can rest!” “Oh, s**t! This means it is probably what I think (feared) it is.” “Why is it so hot?” “Is everyone looking at me?”

I remember my sister coming over and asking if I was ok. I don’t remember what exactly happened next but I know 2 things. 1. I said, “My legs feel like they won’t go” 2. She looked at me and I looked back in a gaze that said a thousand words and held a thousand feelings. The theme was “it’s M.S.”
My next memory is being on the bench and as soon as I rested and cooled off a bit I was ‘fine’ and we were able to carry on with our walking and sightseeing.

A few days later I was at work when I received the call. A friendly nurse said, “This is Dr. Englert’s office and doctor would like you to come in so he can talk to you about your MRI results.” Ugh. There it was. I immediately thought, “They NEVER call you with good news.” It was my experience that I usually had to bug my doctors for any test results. I said to her, “do I need to bring someone with me?” I wish she would have answered right away. Instead, she asked me to wait a minute and put me on hold. When she returned she said, “Doctor wants me to tell you that it is not a tumor and you are not dying. But, he thinks it is a good idea to bring somebody with you to get all of the information.”

And there it was. I had been given the official ‘something is wrong with you’ diagnosis. I was the Program Director of Domestic Violence Outreach Services at the time. Working for a social services agency made it very easy for me to tell my boss a brief amount of info and just go home for the day. The strange thing is that I have no idea when I saw the doctor. It could have been that day, the next day or even later in the week. I suppose it doesn’t really matter.

I know that the appointment occurred. My memory of it is interesting. I remember it from in my body and also as an observer from the ceiling of that little exam room. I can still hear the actual words, “you have Multiple Sclerosis”. When I think of that moment I see the words float innocently into the space direct from the doctor’s lips. They just linger in the air and I feel like I can’t stop following them around the room. I am distracted by their presence. My sister was there and I am sure she asked questions. I think I may have asked questions too. The doctor told me that I would not have to make any significant changes in my life but that I could never go into a hot tub again. Huh? What? He explained that in the past that doctors would put patients into a tub of hot water and if they got worse they ‘knew’ that the patient had MS. He said something else that I clearly remember. He said, “This is a good time to be diagnosed with MS”. It sounds crazy! But, I knew what he meant. The first medicine that was used to slow MS progression had only been available for a few years. Progress was being made and in the scope of history, things were about to go ‘quickly’. He gave me some information about the 3 drugs that were available to slow down this disease and explained that I should start one as soon as possible. I chose Avonex.

“I have MS.” How many times have I said those words? How many different ways have I felt when I said it? And yet…I rarely say it anymore. A few years ago I was on a tele training call with Iyanla Vanzant. (Google her if you don’t know her) I asked a question and she asked me to identify myself. Of course, “I have MS” was a part of myself description. She stopped me immediately and told me to stop claiming that disease as a part of who I am. She went on to say that if I always claimed it as a part of me I would indeed always have it. It would never have the option to leave. GENIUS!

I now say things like “I am being challenged by Multiple Sclerosis”. I know it as a temporary inconvenience. There are moments and days that I feel this beast of a disese takes over my life. But now I know that it is not a part of who I am and definitely not a part of who I strive to be each day.

Words have power. I believe that we should always take care of how we treat ourselves and that includes how we talk to and about ourselves. Start right now. Close your eyes and say nice loving things to yourself. No matter what obstacle or disease is challenging you, it does not define you.

I know it may seem impossible to find one thing you love about yourself. So, let me help.

You are amazing because on this planet there is no other person just like you. Let those be the words you see coming from my lips and drifting around the room.

Labels: Avonex