The Polishing of Pain

Jun 03, 2010

In the past 5 years, I have lost a lot.  I lost my marriage, I got a divorce (two different things), I lost my little niece and nephews who lived with me, and in the matter of a few months I lost my body, and with it, hopes for the kinds of futures I’d always imagined.  I miss my kids more than words can tell, and that loss is the hardest.  But for the purposes of this blog I’m going to talk about losing my body.

5 years ago I started having intense pain through my whole back.  I was put on bedrest, which didn’t help.  I slowly started learning to endure the pain to be able to sit or stand for 10 minutes, then 20, then an hour.  I slowly worked up my pain tolerance to be able to work full time, something I couldn’t have imagined when the pain started.  I always laugh when I tell that first part, because I would KILL to be at that level of pain now!

Anyway, doctors couldn’t figure out what was wrong with me.  I saw specialist after specialist, many of whom told me it was in my head.  I started having other pains, too; my hip would partially dislocate a lot or wrist or ribs.  I didn’t tell anyone about that because I didn’t want to seem like a hypochondriac!  My pain continued to get worse and worse.  Then my siblings started having rib dislocations and shoulder dislocations.  Doctors say that a bad dislocation can hurt as much as a break.  Last summer when I had 5 dislocations in one day, I got on the internet for the gagillionth time, determined to figure out what was wrong with us.  I finally found it, and after seeing various specialists and geneticists it was confirmed; a rare genetic disorder called Ehlers-Danlos Syndrome.

Within a month, I started having as many as 60 dislocations a day- about half of which were in my fingers.  I was in agony.  My husband and I had just separated, I had just lost my niece and nephews, I had moved back in with my parents, and I could barely feel the pain of that because all I could feel was the torture in my body!  I couldn’t walk or my hips would dislocate.  I couldn’t wash my hair because my fingers would dislocate.  I couldn’t sneeze or cough or sing because my ribs would dislocate.  My back pain was at an all-time high, and I couldn’t stand to relieve the pain.  The first time I had to have my 13-year-old sister wheel me the 10 feet from my bed to the bathroom, I cried for days.  I had to give up my career as a children’s photographer, and I lost all the things I thought made me me.  I couldn’t hike or jog or figure skate or push a cart at the grocery store.  I couldn’t brush my teeth without crying from the pain in my fingers.  I lost the ability to carry on a simple conversation without putting all of my effort into concentrating on the words and not the silent screaming in my ears.  I missed my kids.

In the coming months, the pain eased *slightly.* There were a lot of prayers for my sister and I.  I got splints on my fingers and can use my hands again!  I even had a miracle of 24 hours without pain to do the things I longed to do one last time.  But the pain is still very intense and very constant.

The summer before this all happened, I was privileged to photograph a beautiful family of four.  The family had been driving home from the funeral of the dad’s parents.  Brett, the father, drove a truck behind his family so he could pull a trailer full of his parents’ belongings.  When they went over a rock, the trailer flipped and pulled Brett and his truck down a steep ravine.  Brett became a quadriplegic.  As I laid in bed last November, I realized that Brett would kill to have what I have.  I think he would give anything to be able to hug his 3 & 5 year old back when they hug him.  I think he would give anything to be in a wheelchair SOMETIMES; to be able to get his own glass of water SOMETIMES, no matter how much pain he’d be in.  There are hours that I can walk.  There are times that I can hold a baby.  There are times when I can reach to get something on a shelf and my shoulder doesn’t dislocate.

Last summer, my therapist asked me to make a list of all the things I could always do.  I tried for an hour and only came up with 6.  I thought I was at the max with physical pain.  Then November came along and I lost the use of my fingers and was in much more pain than before.  When I finally got splints for my fingers and regained the use of my hands, I had made a new list, and you’d better believe there were more than 6 things on that list!  I can now type.  Play the piano.  Comb my hair.  Put on make-up.  Tie my shoes.  Dial the phone call.  Do genealogy.  Paint my nails.  Crochet blankets and bandages.  Cut out flyers.  Scrapbook.  Make art.  Write a letter.  Before I lost my fingers, I thought I could only do a few things.  I was wrong.

Now I know that every time something is in socket, or doesn’t hurt too badly- that is a miracle.  Every time all of my ribs are in socket at once and I can breathe- that is a miracle.  When I can walk and look people in the eye instead of sitting in a chair below them- that is a miracle.  When I have the energy to shower and get ready, and STILL do another activity that day or leave the house- that is a huge miracle.  Having a wonderful, supportive family and an angel mother- that is a miracle.

I love the Jason Mraz song, Life is Wonderful.  The lyrics ring true, and I have listened to them over and over in the various losses of my life.

It takes some old to make you young
It takes some cold to know the sun
It takes the one to have the other.

It takes some work to make it work
It takes some good to make it hurt
It takes some bad for satisfaction.

It takes some silence to make sound
It takes a loss before you found it
And it takes a road to go nowhere
It takes a toll to make you care
It takes a hole to make a mountain.

It takes some fears to make you trust
It takes those tears to make it rust
It takes the dust to have it polished.

La la la la la la la life is wonderful
Ah la la la la la la life goes full circle

Ah la la la la la la life is so rough
Ah la la la la la la life is wonderful.

 

I am not thankful for my trials.  When I hear people say they are, I have to wonder if they have really been through something awful!  The only thing I’m thankful for is that they’ll be over someday! I can’t have the life I thought I would, and I don’t think it’s fair that I can probably never take care of a child again because I can’t even take care of myself.  I don’t really know what in the world I’m doing in life anymore- but hope I figure it out!  What I do know is that I know joy and I know pain.  I know that I have learned a lot from losing a lot.  We wouldn’t know good if there wasn’t any bad at all.  I know that “it takes the dust to have it polished.”  And, boy, some of us will be awfully polished someday!    I’ll see where the polishing takes me.


Comments

Miggy on 06/03/2010
Oh Jenn. What a horrible, terrible position to be in. And thank you for being so honest as to say your not grateful for your trials. Not that I can relate, but I don't think that we're always 'supposed' to be grateful for hardship. I think sometimes it really is something to simply be endured. And on a slightly related note, I was thinking today about the things I enjoy and somehow thinking about people in the bible and wondering if they had hobbies or interests beyond just doing the daily things it took to survive. Yesterday I read an article about 80 million nomads in India and what their lives are like--again it seems like they were devoid of all the 'extras' that I get to enjoy--like painting or sewing--for fun at least. And I too thought about how much I feel entitled to those past times, talents and hobbies and would I feel like ME if it just wasn't a normal part of my life. I don't know the answer, but I realized {once again} that I don't 'deserve' these to have the life I have, more than anyone else...I take it for granted and it's just one more thing I don't have any claim on or any right to expect--but yet I do expect it. Anyway, I'm sorry this is the reality you find yourself in. God bless.

Rebecca on 06/03/2010
I am grateful for your honesty. I hope that in the life yet to come you will find hope and peace that has elluded you in this life. I to am dealing with several health problems that leave me in pain and frustrated. I am currently seeking a diagnosis so that maybe they will know how or if they can help me. I pray for your continued bright outlook. I am so glad you chose to share your story, I know someone's life will be forever altered because of it!

Meg on 06/03/2010
I have an incurable chronic illness and can relate to your journey. It is a strange kind of grief, mourning the loss of your health. I appreciate your honesty in admitting that you're not thankful for the pain. I'm not either and I always cringe a little when others with my illness call it a "gift" or a "blessing." To me, it's a hardship with a side effect of making me stronger--I'd still give it up in a second to be healthy and weak but I try to wring the best out of it.

Spencer Jackson on 07/05/2010
I have a physical disability called cerebral palsy. (I wrote the first post in this category.) I came back to read these other posts earlier today, and I have been thinking about Meg's comment about cringing when others with that specific illness calling it a "gift" or a "blessing." First of all, I recognize that no one's situation is the same. I also respect everyone's right to feel the way they do about their situation. That being said, I have often referred to my disability in this manner--as a blessing. Upon reflecting further today, I have developed some thoughts on this idea. I, too, would give it up in a second if I had the choice. My disability, honestly, is not all that severe compared to some others (at least from my perspective...and perspectives throw MANY dimensions into the discussion). It's also not an illness. Honestly though, comparing any illness or situation is pretty much pointless as they are all so different. Upon thinking further, I'm not so sure that I truly regard the disability itself as a blessing. I mean, really, how could it be? I needed to stop and realize it's the effects of my disability that I really consider the blessing. My disability has indeed helped me develop (and has indeed required) a lot of emotional and spiritual strength. It is this strength for which I am ever so grateful. It is the perspective gained which is the blessing. It is the opportunity to help others, to give others strength, to inspire, to lift, to encourage; all by merely fighting my own battles and putting on a good face (I had to look up this phrase because I couldn't remember it--it means "to face adversity cheerfully"--which can at times be more of an act than the truth). It is the ability to appreciate the struggles of others a little bit more. These are things I am really referring to when I call my disability a blessing. I just wanted to share these thoughts.


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