Dear Kathy,
It is very late and so I'll just write a short note for now and try to write
more later, but I just read your note on the TMIC list a few moments ago, and
my heart went out to you and your niece. I hate to hear of anyone having TM,
but it seems it would be especially hard for a child. I have a 10 yr. old (as
well as a 13 and a 4 yr.old) -- I just can't imagine him having to deal with
this. I can honestly say, by God's grace, I'm glad I have it and not them. How
was Haley's diagnosis made? Did they run MRIs, etc., to rule out stroke
(unusual in a child, I know) or other causes? No one really knows were TM
comes from, but the prevailing theories are a virus that "comes in like a
tornado," does its damage, and leaves; the other theory is a possible auto-
immune response -- the body attacking itself. But, again, no one knows yet
what exactly triggers that response. I have been helped a lot by reading about
multiple sclerosis, as it seems to be TM's closest relative and a lot of the
symptoms are similar. Actually, some times I couldn't or didn't want to read
much about MS at first, because it scared me, but later it did help. Symptoms
were described that caused me to think, "Yes, that's exactly it! I just didn't
know how to say it."
You asked about Haley's breathing being affected. I think TM can affect the
muscles of the diaphragm -- Jim Lubin, who started and maintains this list, is
dependant on a portible respirator. He is the only one on the list I know of
whose breathing is permantly affected, but for a few, breathing was affected
at first.
I have to agree with what Maria said, also, about being a female and the pre-
teen/early teen years and hormones and seemingly small problems being larger
than life -- when hit by a really big problem, it must seem insurmountable.
But it's not. I don't know if Haley likes to read, but I like to read
especially biographies. One of my favorites is "Joni" by Joni Eareckson Tada
who was paralyzed from the neck down as a teen-ager in a diving accident. I
read it years ago but just recently read it again, and identified with so many
of her struggles with acceptance and dealing with her situation, even though
my situation is not nearly as bad as hers.
Many of us have been helped so very much by this list, by the help, answers,
and support we get here, as well as the knowing that we are not alone. If
Haley can get to a computer and participate on the list, I think that will
help a great deal. If not, the Transverse Myelitis Association
(www.myelitis.org) publishes a newsletter from time to time.
How to get her motivated and interested in life again? Well, that's hard to
say. I think all of us go through slumps like that, especially in the
beginning. There are periods of discouragement, of grieving. But, keep
encouraging her. Hopefully, knowing that there are others who have this same
thing and have gone on and have purpose and joy will be an encouragement to
her. Many on the list were affected by TM as teen-agers; hopefully they'll
write with perspectives from that angle.
Well...so much for a short note!! :) Just wanted to let you know I'll be
praying for you all. Wanted to close with one thing that has helped me most
through all of this:
ISA 41:10 Fear thou not; for I am with thee: be not dismayed; for I am thy
God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee
with the right hand of my righteousness.
Barbara H.