I had lined up several
'layperson' speakers for the May 1 Patient Symposium in NY. One speaker
could not make it to NY because of his own pain levels. His talk was
supposed to be about being the spouse of a chronic pain patient. At
dinner Friday night, less than 2 days before the conference, I asked my
wife, Diane, if she'd consider speaking. I was surprised when she said
yes. The next couple of days were amazing as I learned things that I
never knew... And she did too.
The most amazing thing she said
was, "When we went to Germany for your surgery I was not afraid at all.
For the first two surgeries, I was frightened because I knew what could
go wrong. You could bleed out, you could be paralyzed. For your third
surgery, I felt that if you had complications and were a paraplegic or
quadraplegic, I could deal with it... I could handle it better than I
could handle the ongoing pain.
Diane told me about a letter she
had written to our daughter... 16 at the time. She had been up all
night and, at 4am, was sitting at the kitchen table crying. She had
forgotten about it until she recently helped our daughter move and
discovered that Susan had kept the letter in her treasure box. Diane
wasn't sure what it said, she just knew that she wrote it when things
were about as bad as they had gotten. We asked Susan to type it into an
email, but she wouldn't do it... "I don't want to cry." So she faxed it
to us. I was overwhelmed. I had never known things were that bad, but I
was living in the fog of pain, Neurontin, Oxycontin, depression, etc...
You'll read this letter below... Unedited... Just as it was handwritten
about 6 months before my surgery.
We also had some pictures
emailed to us to use in the presentation. One family shot shows my
forced smile through clenched teeth. In another shot, I was laying on
the grass at the Norton Simon Musuem with Taffy, our service puppy.
Diane had asked for pictures with Taffy because she wanted to talk
about how important the 'pet therapy' was for me. Again, I had
forgotten how bad things were and was overwhelmed when I remembered
that the outing to the Norton Simon Museum was the first time I ever
used a wheelchair.
Diane also talked about how important her
support network was for her, and about the need to take care of
yourself and family, as well as caring for the spiney. We understand
how lucky we were to have had a stable marriage and happy family before
my spine problems. I don�t think the situation could have taken much
more stress. Our hearts go out to those who don't have a support
network like the one that helped us to get through the ordeal. Diane
had gotten her RN before we started having kids. She had been a
stay-at-home mom for 18 years, then found herself supporting the
family, working 12.5 hour night shifts - 7pm to 7:30am.
this unfolded, it became clear that this topic is not discussed enough.
While we live through our own spinal hells, our family does too. Their
lives are destroyed too. I will certainly include sessions about this
at future events. I'll include caregiver support issues on the iSpine
Here is the unedited letter. I have to say that many of
the 'teen daughter' issues have nothing to do with my spine problems
and we are simply seeing normal issues between parents and teens. She's
20 now and we never fight any more! Susan, if you are reading this, I
love you so much and am very pleased that you are willing to share this
with the world. Your saving this letter, and your willingness to share
it will help countless others to understand and deal with the horrors
they are experiencing as they are dealing with their pain or the pain
of a loved one.
April 6, 2002
can't believe we're at this point. You never talk to me any more unless
you want something. I can't stand the fighting between you and Dad
anymore. This has been the worst year of my life and there have been
many days when I wish I could just pack my bags and leave. It would be
so much easier to take care of just myself. That's not the way life
works. Life is not always fair or easy and I love everyone too much to
leave. Dad is really sick and injured. I know it's been a long time and
we are tired of it. I feel like I haven't been very nice to him lately
because I'm burned-out and tired. It's not easy to take care of sick
people for 12 hours and then come home to someone in pain. I know it
seems like he is obsessed with things, but he's trying his best. He is
on heavy doses of medications.
I know you feel like you are
picked on - you always have. Sometimes I think it's your perception and
sometimes I guess I expect too much of you. You are gifted and talented
and can accomplish what ever you set your mind to. I wish you would
make up your mind to get along with Dad. You need to show him some
respect and compassion. He really loves you and has a lot of good
things to teach you. He would love to teach you do drive (and you
really don't want me for a teacher.) It would be good for him. It would
give him something to look forward to. We need another driver in the
family. I don't know how much longer Dad will be able to drive. (Don't
tell him I said that.) He is still holding on to dreams of being able
to play soccer again. I think he will be lucky if he is pain-free and
able to walk again.
I'm sorry that I'm grouchy and tired, but
I am. Work is very stressful and tiring. I need some rest on my days
off. Work has also been good for me. I think that I would go crazy
being here all the time with these problems. At least work is an escape
to a different world. I'm too busy dealing with other people and their
problems to dwell on my own. I work with some wonderful people and
without their help I would have quit after two weeks. I can imagine how
Dad feels, not being able to support his family. When I realized that
Dad wasn't going to be able to return to work, I had a really awful
feeling. How can I support us? Will anyone hire me? Do I still have
enough knowledge to be a nurse?
I have learned and grown
through all of this. Even if Dad could go back to work today, I would
continue to work. I would probably work part-time. I NEVER want to feel
like I can't support myself again.
I have given you my love
and support for years and have many wonderful memories (beach days,
walks in the rain, birthdays, swimming, playing with pets, art, dance,
gymnastics, etc... ) Some not so wonderful memories too. (chicken pox,
concussions, teeth pulled, mono...)
I need your love and support now.
Sorry about the writing. I'm too tired to recopy it. Please don't share
this letter with anyone else. It's meant to be private.