Thursday, December 10, 2009

Denied again. The Plan.

"we cannot book a surgery until:

the bone density has significantly improved
a follow-up visit at TCI is done
the CCF failure is again confirmed with an ICT
the TCI surgical committee ratifies the CCF revision


Blunt, as always. Initially, this news was absolutely heart-breaking. I spent about an hour in hysterical, inconsolable, angry tears. However, I now have a bit of a more concrete plan.

#1 Survive the next 2 months, doing whatever is necessary. This includes: spend less time alone, don't feel obliged to work the 1-2 hours/week scheduled, focus on the goal.

#2 Go in and get the DEXA scan on February 22. Pray for "significant improvement".

#3 Schedule a follow-up and new Invasive Cervical Traction surgery date a.s.a.p. (hoping early March?)

#4 Schedule my LAST surgery, a Cranio-Cervical Fusion Revision a.s.a.p. (hoping in April?)

#5 Recover and move on with LIFE!!!!

That all sounds great. I'm glad I wrote it out. I don't feel quite that confident yet. Intense sadness makes you feel a bit fragile. However, I still believe that recovery is a possibility for me.

Over the years of illness, however, the term "Recovery" has had dynamic meaning to me. Initially, after my first brain surgery, at age eighteen (2002), recovery meant complete recovery. It meant going on to live a "normal" and active life with no pain, no sickness, and no restrictions. With the extended length of the illness, going into the eighth year since decompression surgery with NO lasting relief, I now have a new meaning for recovery.

I understand that my life will never be without restrictions. I will always need plenty of rest. I will never work 40 hours/week.
It will never be without sickness (significantly more than average).
And it will certainly not be without pain.

I now have modified my hope for the future, to be more realistic for someone with this amount of nerve damage (from postponed surgeries) and the bones and joints of someone fifty years older than me.

My hope is to have pain that only interferes with my functioning some of the time. My hope is to resume working 10-20 hours/week. My hope is to have enough health and energy to have a (small) family. My hope is to make my life about more than just me. To contribute more to the lives of loved ones. To be a shoulder to cry on, instead of the one crying. To payback all of those that have helped me get to this point. To be the supporter and joy that my lifelong partner deserves. To bring happiness instead of stealing it. To stop surviving my life and start living it!

I need to find a way to accept that I have lost much of my teens and 20's to this illness. That doesn't mean there's nothing left. Look ahead, and stop looking back. Don't hold onto worthless resentments of everything that was lost. Understand that what really matters is what I haven't lost...what I still have left.

I know these things to be true. It's really living that way that is the challenge. It's finding a way to feel that way all of the time. Not just know it, but feel it.

Especially when I have to cope with being weighed down by seemingly limitless bouts of depression. For the majority of the last year, I've had a lingering numbness about my health. That's one kind of depression. Today, I do not feel numb. The floodgates are open. The tears haven't really stopped all day. Today, I feel incredible, deep, desperate agony.

But I do understand that this is just today. If I would just go to sleep, it will be a new day. A new day! To keep developing that most-hated virtue named patience. And it's challenging partner: perseverance.

So I will keep living. Because I have many people that love me. That's what makes me so lucky. I may still be crying ('cause I can't seem to stop), I will certainly have pain, and I'll want to give up many more times. But giving up is never an option. How could I let down all of the people that have loved me and cared for me through these very dark times? That would be ungrateful, unforgivable.

I apologize for the intense mood swings. It's probably best that I spent most of the day alone. This is quite unbearable. But somehow, someway, there is still hope. Because there is still a chance, a possibility for a better life; for a change. I'm not out of chances yet, so I'll keep fighting, even when the pain is this complete.

Thank you to my family for loving me through this...literally, pushing me through this with love.