The Clinic

Friday I went to the MDA clinic in Phoenix for a visit with the neurologist and respiratory therapist.   It was just a routine checkup and I’m doing OK, although they want me to see a pulmonary specialist since SMA does compromise my breathing ability in that it weakens the muscles of the diaphragm.   I do miserably on breathing tests but my oxygen saturation levels are excellent so my body compensates quite well.   However if I get a cold or bronchitis I have a very hard time.   The neurologist thinks if I see a pulmonary specialist now it will be better than waiting until I’ve got real problems.   He could be right — but I just hate going to doctors.

I also don’t like going to the MDA clinic.   Don’t get me wrong, the people are always very nice and the doctors and other medical practitioners that I see there are for the most part tops in their field.   The reason why I don’t like going has to do with my history.   You see I’ve been attending MDA clinics since I was 18 months old.   As a child and an adolescent MDA clinic was at minimum a twice yearly event and wrought with much emotional turmoil for me.

Going to the clinic would mean that I would see a pediatric neurologist, a physical therapist, an occupational therapist and other various medical personnel.   Usually there would be medical students there to observe.   I would go through a battery of tests and questions which would bring me to the same result every time.   The emphasis of all of this was on what spinal muscular atrophy was doing to my body.   Everything I could not do was showcased.   The reality of my fragile physical condition was laid bare for everyone much in the same way that my clothes were removed and I would be given one of those horrid hospital gowns to wear.

There would be discussion of my scholastic achievements and the fact that I was a normal active child much like any other child except for the fact of my very disabling condition.   Somehow it seemed less important than the fact of my disease.   I always left those clinic appointments feeling sad, very sad.   I even remember crying many times at those appointments.

The emotions from those years, especially the adolescent years, are still very strong.   I was astounded on Friday at how much of it came back to me while sitting and waiting at the clinic.   I’m not a person who lives in the negative or dwells on what I cannot do.   I’m a person who focuses on what I can do and strives for accomplishment.   My life is a happy one and a satisfying one because of the blessings of God and my family and friends.   I’m glad I don’t have to visit the clinic very often but I am surprised at how much of the pain is still there.


  1. Tracy
    Mar 27, 2007

    Karen I can understand why you dislike going to the MDA clinic. But you never seem to let anything physical get you down. You are one of the most well-rounded people I know. As your friend I can tell you I honestly forget at times you are in a wheelchair! I admire your intelligence & great sense of humor.

  2. Norm
    Mar 27, 2007

    :grin:As the “Fat Boy” in this team, and the only handicapped person in the building….always remember that we are in this together. You to think and be beautiful, me to take out the trash.

  3. pb
    Apr 1, 2007

    Don’t go. Send the doctor an explanatory letter–or direct him to this blog. If you are just another case to them, they will let it go.

    If the doctor is a rare jewel, it will make a difference.

    A friend in Spain had “Elephant Man” syndrome–very mild, almost undetectible–and had awful memories of being their guinea pig. It still hurts to remember her, describing the off-hand treatment and her little-child reaction that clearly stayed with her.

    Everyone does not necessarily have a right to know your secrets. Not everyone will benefit from your upbeat attitude and positive outlook.

    It has been my experience that not all doctors or clinics are worth the grief they cause. Accordingly, I write off the ones that pain me.

    I am still here, still functioning, and still a generally happy person.

    Don’t let the insensitive jerks ruin your outlook.