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Sunday, December 29, 2013

The solstice was December 21st--the darkest day of the year has past.

My reaction to my situation has been of interest to me. Prior to my "death sentence" diagnosis, when I felt pain in my hip I would think: "This hurts, but it's going to get better. I just need to do my physical therapy exercises and keep working on flexibility. This is not forever." After the diagnosis, when I felt pain I would panic and think: "My bone is dead! There is nothing I can do about it! It has to be CUT OUT!!!" This would be followed by horrible sadness after which I would remind myself that I'm not dying and this is a condition which can be remedied (even if the remedy was not what I wanted).

The "interesting" part of all this is that my pain tolerance decreased considerably as I realized I was not going to get better. My general feeling of helplessness increased. My desire to withdraw and cease interaction with people became overwhelming.

The doctor didn't tell me to stop going to the gym. He told me continuing to build the muscles surrounding the bone would be beneficial if I could tolerate the movement of bone on bone in my hip. He made no recommendations for treatment in the interim between now and when the hip would be replaced, preferring to wait for the MRI results so he would have more information before making such recommendations.

My depression increased as my ability to manage pain became nonexistent. In only a few days, I had come to view myself as disabled and old. Random crying was part of every waking hour. Sleep was miserable.

Christmas morning was rather lovely. Around 4 a.m., I got up and did some online work while my family slept. DJ, who has never been able to sleep well on Christmas Eve, finally decided everyone had been asleep long enough and woke everyone at 8:30. We opened gifts, made breakfast, and settled into a game of Monopoly.

My mother had invited us to Christmas dinner. I was trying not to be unpleasant about another Thanksgiving-like turkey dinner--but I have my limits. As I provided most of the dinner for Thanksgiving and grocery shopping had been sparse prior to Christmas day, I chose not to volunteer food or help for Christmas dinner. I know--that was unkind--but I was feeling miserable and I didn't care.

We arrived at my parents' house around 2:00. I visited with my family (parents, brother and family, grandmother), but was feeling increasingly ill. Finally, after 30 minutes, I said I needed to go home. My father, who has experienced the pain of bone against bone movement (he has post-polio syndrome, which causes cartilage to decrease and bones to wear out), sent me home with two of the very potent, prescription pills he takes to manage pain. Legality sometimes takes a back seat to helping a loved one in distress, I suppose.

I went home and fell asleep on what we fondly call "The Napping Couch". When I awoke, I felt better, but still nauseated and in pain. I thought about taking one of my dad's pills, but opted for an OTC pain killer instead. I didn't want drug-induced sleep for the rest of Christmas day.

I read a book. I cleaned my kitchen. I watched the sun set. And I thought about a lot of things.

I decided that until I'm told I cannot, I will continue to work out as I have been. I feel better both during and afterward, so I don't believe I'm hurting myself, and I'm using and building the muscles that will help with recovery after surgery.

I decided I'm not going to feel sorry for myself anymore. It has its place, but I've allowed it enough time. At this point, it's just making me more miserable.

I decided to start researching and looking at my options, finding information about the things I'm facing, and learning about what's happening to my body so I can prepare for my future and cope with my present.

I decided I should probably talk to Therapist.

Thursday I went to the gym for the first time in nearly a week. I lifted weights, ran on the elliptical, and sat in the jacuzzi. There was some discomfort, but the benefit was worth it.

Friday I talked with Therapist. He had some good things to tell me and felt suitably sympathetic toward my situation. He thanked me for talking with him--said I'm a "bright spot" in his life. That was nice to hear. I don't feel very bright right now.

Yesterday, I filled out an application for an appointment to see a doctor who specializes in Birmingham hip resurfacing procedures, which is basically a hip replacement for runners. The procedure is about a decade old and has had fairly good results. I didn't think I would be a candidate for this, but when I went to the website and found it was recommended for "young" people--and realized I'm not even old enough to be considered a "young hip replacement candidate" (young = people in their 50s and 60s), I decided I needed to look into this. I'm really not ready to stop running.

The MRI will determine my eligibility based on the extent of bone death and condition of the remaining bone. I'm encouraged by the fact that avascular necrosis was listed with the conditions that are considered for this joint replacement. I have nothing to lose. If I'm told I can't have the joint replacement I want, I'll get the total hip replacement and plan on a few more before I die. I'll find something else to love. I'll be okay.

In the meantime, my emotions are all over the place and I don't want to be with people at all. I telephoned someone on Christmas day, because I knew the desire to isolate was becoming unmanageable, but I've not been able to talk to anyone since then. I've made attempts, but my ability to follow through is gone, so if I'm not met halfway, it's probable that the attempt will die. I just don't feel able to pursue anyone right now, to insist on attention--and doing so makes me feel unwanted and annoying. I'm not excited about placing myself in that position, so I probably won't.

But I'll keep going to the gym, and I should have MRI answers next week, and I'll see the hip specialist as soon as I can. Therapist said it's best if I keep talking to people, but if I have to chase them down, I would be better off using my energy for more pressing things--like staying sane, and managing pain and depression. I think he's right.

In the meantime, if you come visit me, I'll play you some Debussy. I learned a couple of his pieces to give away as Christmas gifts, but was unable to do so--so I've been giving them to anyone who chances by. They seem to be happy to listen for a few minutes. One sweet friend said it was "transcendent" but she adores Debussy, so that's to be expected. I won't be able to play for a few months after my hip replacement, so I'm performing as much as I can right now.

Monday, December 23, 2013

Avascular Necrosis

About a month ago I noticed that the pain in my tendon was becoming pain in my outer hip and the muscles in my thigh and backside were in spasm almost constantly. I was losing mobility in my joint. When I stepped on my right leg, or shifted my weight from side to side, there was audible popping in my hip. But most importantly, I was sleeping very little at night when the pain would intensify to the point that I could barely tolerate it.

So I made an appointment to see a sports medicine surgeon, thinking that it was time to get that tendon release and just get better--and why not see a doctor who would do the surgery and get me right back into running?

I saw him Friday. There were x-rays and a brief exam and a diagnosis. Then I went to the parking lot and cried for 20 minutes before I went home.

I'm not going to run again. I don't have tendonitis. I have avascular necrosis. Translation: the bones in my hip and upper thigh, and all the surrounding tissue and cartilage, have died.

This is a condition usually contracted by the following:
-Men between the ages of 30 and 60 years old
-People with sickle cell anemia, AIDS/HIV, lupus, diabetes, or Gaucher's disease
-People who drink alcohol excessively
-People who take steroids or osteoporosis drugs
-People who have had dialysis, or organ transplants, or who have undergone radiation therapy for cancer

As you can see from the list, I am not part of the "at risk" group. My doctor kept saying, "This is really, really bad!" and "I've never had a female patient as young as you who has contracted this!" After about the fourth repetition of those statements (with variations), I said, "Stop saying those things--you're making me really stressed!"

Then I learned that:
-There is no cure
-I no longer have any tissue between the ball and socket of my hip (bone on bone)--hence the loud popping sound, loss of movement, and intense pain
-I'm at risk for stress fractures, hip fracture, and eventual bone collapse

So I'll be having an MRI as soon as possible to determine the extent of the bone death and rule out bone cancer, and then a total hip replacement--with at least two more to look forward to in my future, as I am "so young!" Yay.

It's not the worst thing that could happen. And when I have a new hip I can still bike or swim or even play tennis. And the pain will be significantly less. But it's not the answer I wanted. And sometimes when I think about the moments when I would push through that threshold--the one where my breath comes in ragged gasps and I'm feeling like I might die if I run one more step--to the place where rhythm kicks in and I feel stronger with every breath and I'm absolutely certain I can run forever...well, it makes me sad.

Until two years ago I had run nearly every day of my life. I miss it. And sometimes, on warm spring days, the butterflies would circle and keep pace with me, and wildflowers covered the entire prairie, and in the summer I watched baby hawks learn to fly, or antelope running in front of me, or listened as breezes whispered through long prairie grass.

Everything will be fine. I'll get a new hip. I'll be free from pain. I'll still be me. But there won't be anymore running with butterflies, and part of me--right now a very large part of me--can't seem to stop feeling sad about that.

Tuesday, December 17, 2013

Getting It

So I wrote a post not long ago, about finally understanding how human sociality works; how it's possible to love someone deeply and wish to spend a great deal of time with him or her, but a few years later the novelty has worn off and one has moved on to another person (also deeply loved and interesting, of course). And I do understand.

I am not a stupid person, so it's likely that I always understood, I just didn't want to. I am also a stubborn person.

(I am eating a bagel with sesame seeds which keep dropping into my keyboard as I write this. While I'm not happy with the situation, I'll probably keep eating the bagel.)

My social pattern, until about eight years ago, was to charm people, enjoy their company, build a circle of those I could call or invite to lunch, but never divulge information about the person inside me. Ever. And should one of those people get close to me, I would simply become very busy, avoid contact, and wait until they lost interest. And they always did.

When I actually allowed people into my life--complete strangers, many of whom I met online--and bonded with some of them, it was dreadful. I felt exposed and afraid all the time. ALL THE TIME.

I thought it was because I knew they were just going to use me up and then leave. But there was more.

My experience has always been that when I love someone deeply (Darrin excepted), eventually they leave. And while I'd like to be the person who can shrug it off and go find someone else, that really isn't how I'm built. And so I knew from the start that any lasting relationship/friendship/companionship/whatever that I became involved in, would change. That's to be expected--even anticipated, sometimes.

However, there is a feeling I've been getting, of late. I am familiar, predictable, no longer scintillating company. There are just too many other people in the lives of people I love who are more....everything. They're funnier and warmer and more beautiful and smarter and just MORE.

Truthfully, they're not. However, they're not "old" friends. They're undiscovered territory and that's compelling and interesting. I have become the book that has been reread enough times that it's no longer good for anything but nostalgia.

In a perfect world, I would be making my own new friends so that when I become a nostalgic memory, I'll have buddies to spend time with. I don't work that way.

I rarely tire of the people I love. There is always something new and beautiful about them just waiting for my discovery. Always. So when I become hackneyed to the other person, I'm still finding out more about them, still getting to know them, still fascinated by what I'll discover next. Clearly, I'm a little slow when it comes to social development. Either that or I'm a great deal less complex than the people I know and it takes less time to discover everything about me.

Tolkien Boy once told me that real relationships were worth fighting for. I think he meant that. But I'm not really a fighter when it comes to making sure someone continues to care about me. And while I've often said there should be rules about how relationships work and how people love each other, I didn't really believe it. What I believe is that in any relationship each person should be absolutely free to authentically act as they see fit. So if that means I watch as someone walks away, or wish for visits and phone calls that aren't going to come because I'm no longer a priority, that's probably exactly what I will allow to happen.

It doesn't mean I won't resent it. And sometimes I might cry a little, just because that's what you do when you miss someone. And probably I'll call or email or try to make sure the other person understands I still want them. And maybe sometimes, when I'm feeling weak, I might think it's not fair. But in the end, I don't fight. I never have. And I'll watch whatever happens--then I'll read a book, or practice, or work, or clean my house. Because that's what I do. And besides, I know the contact with that person isn't ending--it's just becoming more spaced out. They still care--just not as deeply and not as often.

It's not a tragedy. It's my personal inconvenience. I was built a little differently...not that there's anything wrong with that...

(A more pressing problem is that I think it's time to clean the sesame seeds from my keyboard and I'm not quite sure how to do that.)

Sunday, December 15, 2013

It's beginning to look a little like Christmas.

1. I finished grading my last final.
2. I began working on the 18 credits of continuing education the IRS requires of me if I wish to continue preparing tax returns professionally. Yes, I've had all year to work on it. Yes, it's due December 31st.
3. I called four friends. They didn't answer, but I did it, so I'm counting it.
4. I paid bills.
5. I went shopping.
6. While I was shopping my Christmas tree fell over. I'm not saying whether or not I took a long time shopping so Darrin would have to clean it up.
7. I made grilled baby Swiss and tomato pesto sandwiches for dinner. No one wanted one except me, so it was only my dinner. It was delicious.
8. I sang. All day. Out loud, in my head, and in my heart.
9. I picked the pansies that chose to bloom after 10 days of below zero weather (below zero ALL DAY LONG!) and put them in a vase because they're just going to freeze when the weather turns cold again. Besides, I think they like being with me in my warm house while I sing and Darrin cleans up the fallen Christmas tree.
10. I made Christmas treats. You should come share them with me.

Sunday, December 8, 2013

Today I will decorate for Christmas.

The past four years I have been too tired to do anything except find the boxes where we store ornaments, tinsel, wrapping paper, lights, and decorations. Any actual decorating was done by Darrin and the kids. Last year Adam decided to rearrange my storage area, so finding anything was an adventure. I found the bare necessities for Christmas and left everything else hidden. I think this year I will dig through his stacks of whatever-we-are-storing-but-don't-really-need until I find all four (or six) boxes of Christmas. Perhaps it's time to rid myself of some of it, but the rest will be displayed for the month of December.

Darrin and I had a long talk yesterday. He's concerned because I am still a shell. There are emerging traits of what make me Samantha, but they come and go, and I seem jaded about everything. Darrin mentioned how I used to love talking on the phone with friends, visiting them, spending time with my kids. He talked about how I would get so excited about a sunset that I would prod and nag until he finally came upstairs to watch it with me. He remembers that I used to giggle all the time, that when I walked in a room everyone noticed because I couldn't stop smiling. He said, "Do you remember when you would go to Walmart--not because you needed anything, but just because you wanted to see how many people would smile back at you?"

Yes. I remember. I remember feeling anticipation and excitement and pure joy. But those aren't things you can just make happen. They're sort of spontaneous and unpredictable.

Darrin says I'm still tired. I've not recovered. I suppose he's right, but recuperation seems to be more work than staying tired--which makes no sense at all.

I taught my last class of the semester on Thursday. This was a lovely group of students. The majority of them worked very hard, but more than that, they were engaged and participating in class. Many of them would mention that they were learning things, that they loved my class--two students have changed their majors and will be pursuing pedagogy degrees because of the things they discovered abut themselves during my class. It's kind of a teacher's dream to be able to help a student find where he or she excels. I feel a tiny bit of delight about this--but three years ago I would have been ecstatic. I'm pretty sure I wouldn't be able to stop talking about it. I'd be energized and happy to write the necessary recommendations as those students applied to different programs, and I'd probably follow up with them.

One student needed my help to make some recordings for her audition. I coached her, and rehearsed with her, and stayed seven hours until the recordings were complete. She had done well and she knew it. Exultantly, she turned to me and thanked me for my help. She wanted a hug. I knew this. I congratulated her, smiled my best, and walked away without hugging. I was just too tired. Hugging felt like a huge effort I was unable to make.

I played a short recital on Friday--arrangements of Christmas music I refer to as "trash with flash". But even though I disparage the music, I've always loved it--loved playing it. My millions of years of practice and training slipped into place and I performed very well. An audience member told me afterward that she loves hearing me play; that this particular recital of beloved Christmas music brought tears to her eyes. I thanked her, but I felt a bit of resentment. It's been a long time since I've felt moved by music.

And so I am doing a Christmas experiment. I don't k now if I'll be able to finish, because the time is growing short, but I am learning a piece I heard many years ago; one whose beauty left me breathless. I'm aware that what I connect with is usually not what others would find beautiful, but should the piece be finished on time, it will be my gift to some of my loved ones. I'm also aware that they would probably rather have something tangible, but this will never break, or be the wrong color, or one day be used up and discarded. It might disappear, depending on the interest and memory of the recipient, but that's up to him or her.

I am doing this because I need to value who I am and what I can do. I have begun to play by rote, because it is easy. I need to remember that I was given a gift, one I can share, and no one in the world can play as I do, because they are not me.

For Darrin, for my children, for everyone who cares about me--but mostly for me--I am going to rediscover what makes me amazing. And I'm going to share it. It's time to recover Samantha.