Pain (and all of its manifestations)

As I go through life, as I have gone through cancer,  as I get older, I am amongst the majority of people who deal with some kind of pain on a regular and consistent basis.  Of course we all have emotional pain that becomes part of our background, something we learn to live with (or don’t), something that gives us a little wisdom, empathy, insight, compassion for others.  It waxes and wanes in importance, but it is always there, and everything that comes after is changed by it.  And although we may have many emotional pains, there are some that define us for a while, until we learn to keep moving.  One of mine was not being able to get pregnant — I definitely felt changed by that.  I do not have any regrets about what happened after, and absolutely feel enriched by the children and life that I do have, but there is always some grief that I was not able to feel a child within me ever.

Then there is physical pain which, the longer we live, becomes a part of the everyday experience.  The worst I’ve ever had was before I knew I had cancer when I had excruciating pain in my ribs, my back, my legs, my chest.  I could barely walk, couldn’t sit up,  and was taking ibuprofen like it was going out of style.  Of course it didn’t even touch such pain, which I later found out was caused by the lesions all over my vertebrae and bones, and the tumor sitting on my spine.  I honestly don’t even know how I made it from day to day, I was in such misery.

So I endured a month long hospital stay, cancer treatment, 2 vertebroplasty operations, a bone marrow transplant, and pain became a regular part of my life.  Now I have mostly learned to live with it as well as adapt my activities because of it.  I always take a cushion with me for the seats at restaurants and workshops.  I make sure I rest my back after 3 hours of being up, or after a walk.  I  never stand in long lines. I can’t go on planes.  In the early days of cancer I was finally put on some heavy duty pain medications, and although they also made me nauseous, they kept my pain from being excruciating.  Now I have proudly reduced my pain medication by a significant amount, with the hope that someday I may not need it at all, since it restricts my life somewhat, and ties me to the doctors.  But I won’t worry if that doesn’t happen, because I know now that it is almost impossible to have any life at all when I am in that kind of pain.  I also have a new compassion for others in pain, and for my grandmother, who used to complain about her pains all the time.

I’ve always considered myself a person with a high pain tolerance, and was proud of my ability to withstand pain that others would cringe at.  I liked my coffee really hot, I didn’t like to take medicine unless there seemed no choice, I went to the doctor only as a last resort.   Even during cancer I rarely took the medicine prescribed for “breakthrough” pain in my back, but would rather suffer for a short while than feel out of it. A few years ago I got many tattoos, and survived quite a bit of pain for those.  Only by the last one on my back, did I need to split up the times it was worked on, and that was as much for financial reasons as it was for the pain.

Now I wonder about every new pain I get, am told to have it checked if it doesn’t go away because of my cancer history.  I just came from 4 x-rays for new shoulder pain that’s lasted for months, and for a pain in my back that’s come and gone for at least a year.  I suspect they are muscular pains or arthritis rather than bone pains, and that I just need some physical therapy to correct something that I’m doing to aggravate them.  But I always wonder now, if they mean the cancer’s coming back, or if some other debilitating disease is encroaching on my life.  Ah, the fearlessness of youth is left behind as the years (and experiences with pain) add up.

On the other hand, I have had a partner in pain, and we have come together and helped each other in ways that I never would have known, had I not had the horrible experiences of the last 3 years.  I have a wonderful cousin with a debilitating disease, who has experienced (and still experiences) pain in parts of her body and in ways that are shocking.  She and I connected during all this, when both of us needed someone who truly understood emotional and physical pain so great that it was hard to go on some days.  We didn’t do much calling, or even e-mailing on the computer, we wrote letters to each other the good old fashioned way.  I know that writing was often hard for her because of pain in her hands, but she always found a way.  I (still) look forward to her letters like they are lifesavers (as indeed they have been many a time), and I carry them with me, and read them over and over, and I collect them in a big envelope in my bedroom.  Somehow, all my pain is bearable because she reads my letters to her, and then writes one to me, no matter what the letters say.  I have rarely had such a wonderful connection with anyone in the world, and know that this is forever, no matter what happens.  I can hardly believe that pain has brought such wonder.

There are also painful memories (involving all the other kinds of pain usually), and these form my most vivid life memories because of the emotional connection, and when extreme, they are also the ones whose details I have forgotten the most.

I find that I have actually lost an incredible number of details of the painful memory of cancer, and I know this because my partner is writing a graphic novel about our first year of cancer.  She took me to every appointment, sat and waited through every operation and procedure, kept me company as long as the hospital would let her,  and hung out for many miscellaneous hours when I was going through the bone marrow transplant.  During all the times I was sleeping, drugged, unable to function, or in with the doctor, she drew everything that was happening, everything she saw and participated in.  She has a record of it all, from her perspective anyway, and she is finishing and refining it now.  I sometimes find it hard to read, but when I do, I’m amazed at what I don’t remember.  Sometimes a picture will give me a jolt, and I will have a slight memory of something, and of course sometimes I can remember way too clearly, but often the pictures seem to tell a tale of someone else…a dreamlike someone else.  That’s okay, I figure the mind has a way of protecting us from remembering the worst pain, but I’m glad she holds it for me.  It changed both our lives forever, and will continue to have an effect on what I can do and how I feel, and how I perceive pain in the future, it’s an important part of me.

I often wonder what I will have to deal with when we finally move to Trail’s End, where medical help is farther away, and definitely involves driving, something the pain medication prevented me from doing for 2 years.    But I’m reassured that there are wonderful friends who will help if we need it, and because I have already experienced a lot of pain when staying there, I know the house feels like a safe and comfortable place.  I also know that I can follow whatever path I need to follow, as we make decisions and go forward.  I have survived a lot, I have support systems in place that can move to another state with me, I am not as afraid as I used to be, because of my experiences.  Big sky, dry air, and kind people sound like wonderful antidotes to me, and when they aren’t enough, there’s always drugs.  My pain tolerance might not be what it used to, but it doesn’t really matter.  I have a life to live, and I can live it when my pain is under control (and I will do whatever I can to make sure that I continue to have health insurance so that this is possible!).  I am cultivating acceptance of this.  That’s just the way it is for me now.


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