Dear Friends,

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.

As all 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 http://www.ispine.org/.

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.

__________________
Aug '97 Auto accident
Feb '00 Microdiscectomy L4-5 15mm protrusion successful in resoloving new leg pain, advancing low back pain still debilitating.
Sept '01 Microdiscectomy L5-S1 14mm protrusion successful in resloving new leg pain, advancing LBP still debilitating.
Sept '02 SUCCESSFUL L4-S1 Artificial Disc Replacement, Dr. Zeegers, AlphaKlinik, Munich
Life After Spine Surgery Website
Global Patient Network Website

Hey..tell me about it. When my first major spinal issue came to be my wife gave up on me after a few days. "Why don't you just take a pill and get better? What..are you just shutting down on me now? Why can't you get up and do all the work you always do?" She was a tortuous ***** who made me feel that the injury I sustained doing my duty as a teacher was my fault. That I could not just bounce back in a couple of days was my fault. That I could not walk was my fault.

It was in pure ****...absolute ****. It would take me 15 minutes to crawl to the bathroom to pee. Days..days on end in a lazyboy chair with pillows all around me to try and heal. It took four months before I could even do anything. Another four months went by before the pain went down. All along I never had pain meds, never had treatment...just suffered.

Sooo..anyone I hear about these days who mentions a back ailment...I respect and wonder if they may have a serious problem as I have had for so long. If those close to you do not give acknowlegement to this they are very insensitive people. Spine pain is like no other. I have had all the aches and pains of life and never gotten down about any of them, but when the very core of your body is diseased and/or injured your whole body and brain suffers. It is profound.
jb

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multiple spinal injuries from age 8..on. Disabilities and major pain starts age 19. Problems at all three levels. No diagnosis till age 40. ACDF 2 level Dec. 14,04. Still in pain but moving much better.

I was touched by your letter which echoes of so much emotional pain.

I am brought back to the memory of my wife's dead-silence over the cell phone as I called her from inside my smashed car. She told me later, that at the time of my phone call, she was both angry and terrified simultaneously.

She has spent many nights holding me in her arms and silencing my whimpers and tears from the reoccurring nightmares.

I sit here and write this, with tears in my own eyes, for all of the support and tender love that she has given me in the wake of so much pain and frustration. I will never forget her somber facial expression as she waited on the phone for my MRI results.

When she first discovered my bleeding, she was sitting in the basement with laundry in hand sniffling and sobbing as she clutched my boxer shorts in her hands. I have often caught her crying in the shower. She tries to put on a happy face, but sometimes I feel the sadness and frustration that she secretly has for my debilitating condition. I feel that she is hiding a lot of her own personal pain from me, so as not to worsen the situation. In doing so, she has bottled up a lot of her own pain, fear and frustration, to her own demise. She is now seeing a psychologist for panic attacks that she has been having due to our ongoing saga of chronic pain and continued failure of treatments.

I love you Karin more than words can say.
You have truly been there, for better and for worse.

__________________
Feb.2003 -- Head-on car crash with a drunk driver.
Result -- PTSD, Anxiety, Two years+ of a bleeding and healing abscess upon the sacral area of my buttocks Head aches, SI joint pain, lumbar radiculopathy, right thigh pain, and limping after sitting for too long
MRI results: L4-L5 broad-based circumferential bulge with bilateral facet joint disease and central canal stenosis. L5-S1 annular tear with broad-based central protrusion indenting thecal sac with central canal stenosis.

Thank you so much for sharing such a personal letter. It is obvious how heartfelt and raw your wife's emotions were at the time, and she conveyed her thoughts beautifully.

I have to say that I feel blessed in the way my husband has stood by me through all the medical problems I have experienced. I'm not saying that he's perfect, but he has always been a rock for me, always taking care of me, thinking of me first. I don't know what I would do without him. Every now and then he will whisper to me his fears and concerns, and I think it just makes him feel better to get it off his chest. He also does goofy things, like has me lay beside him on the couch so he can check my heartrate and my breathing. If either one is off, he starts asking me if I have taken my meds properly and such. And another wonderful thing that has happened because of all of this is...my husband has more compassion for others who are aflicted with illnesses that they have no control over. Our mutual friend, who has MS...my hubby told me that if I had never been sick, he probably wouldn't have thought a thing about our friend, and not taken the time to understand all about MS...etc. But my hubby has taken the time to learn about MS and he talks about our friend and how we can help him, told me he would spend the rest of his life helping to take care of him if the need ever arises. I thought that had to be the sweetest thing I ever heard.

Ok, I am going to stop now...I miss my hubby so very much!

Kathe

Mark, my biggest regret about my spinal issues has been the impact it has had on my family. My children have never known me, they have just know the painful man that is effected by the drugs I take and the pain I have. My wife has suffered alot as she has gone from leaning on me, to sharing the burden, and now being the sole financial support of the family. She has her own issues but no matter how tough they are they are overwhelmed by my pain so she bears two burdens. I wish I could go back to helping take some of the load off of her but I am incapable of doing that any more. It has also effected our relationship and that has cheat our children of the life that could have been. Even the extended family has to deal with worry and we are unable to get together with them as often as we would like.

I do have to say though that we have gained some good things from this difficult disease. My kids know disability and are more considerate of others, they are more understanding that people react out of pain sometimes and not just meaness. I have become more patient and understanding of my family.

You are right that our spinal issues don't just impact us but they effect our entire support system.

__________________
1979 first back problems, about once every 6 months
1990 major lumbar attack, started my wonderful
journey in spinie land
1993 L3-4 microdisectomy
1996 L2-5 360 fusion
1999 T8-9 fusion, open thoractomy
2003 C3-7 DDD with cord compression
T5-8 DDD with cord abutment
2004 worsening problems
2004 out on disability and adjusting to my new life

Mark, I want to thank you and your wife Diane and your daughter Susan for sharing such a personal letter and feelings with us all.
I have so much I want to say but will try to keep it short, I have been dealing with these spine problems now for 6 years I am very fortunate to have a loving support system in my husband and three children, of course like all with these problems we have our moments.
Your post here today and the letter couldn't have come at a better time for me, I have many restrictions due to my back and my family are all very thoughtful and helpful but here latley my husband has been driving me crazy as he is always doing everything for me, I find he is always right there when I start something or whatever and it has been driving me CRAZY I feel enough like a invalid and useless as it is that I'm ashamed to say of late I have been very short and even hateful over my feelings.
So please know I thank you all with all my heart for opening my eyes once again to what it is like on the other-side of this terrible illness.
suede

Thanks so much for all the replies...

I printed them out for Susan and Diane so they could see how they have helped people in such a meaningful way.

Mark

__________________
Aug '97 Auto accident
Feb '00 Microdiscectomy L4-5 15mm protrusion successful in resoloving new leg pain, advancing low back pain still debilitating.
Sept '01 Microdiscectomy L5-S1 14mm protrusion successful in resloving new leg pain, advancing LBP still debilitating.
Sept '02 SUCCESSFUL L4-S1 Artificial Disc Replacement, Dr. Zeegers, AlphaKlinik, Munich
Life After Spine Surgery Website
Global Patient Network Website

I think its really ruff when your spinal patient and a caregiver to someone which is what I am.. here my husband has colon cancer surgery may 5th 2004 and 2 month later I had the 360 on my neck.. talk about a mess and having 2 boys at home at the same.. their ages then were 17 and 12.. what it means is you dont have the time to care for your own needs at all.. and I still dont..

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Lets just say "OUCH"
2 anteriors 1 posterior of the cervical neck..
Are we having fun yet ?

Booann,

Sounds like a really rough time.... I hope that you, your husband and your family are all doing OK now.

Mark

__________________
Aug '97 Auto accident
Feb '00 Microdiscectomy L4-5 15mm protrusion successful in resoloving new leg pain, advancing low back pain still debilitating.
Sept '01 Microdiscectomy L5-S1 14mm protrusion successful in resloving new leg pain, advancing LBP still debilitating.
Sept '02 SUCCESSFUL L4-S1 Artificial Disc Replacement, Dr. Zeegers, AlphaKlinik, Munich
Life After Spine Surgery Website
Global Patient Network Website

Mark,

I'm sorry I didn't reply to this sooner. I really have been having a difficult time with this very subject. My DH and I have been through similar, and are going to similar right now, and this emotional rollercoaster has just about run us both into the ground. Tempers flare, emotions run high, patience is short and things are said that aren't meant...I think we all can understand that.

Diane's presentation really struck a chord with me, and I am still trying to address all the feelings that it brought out for me. Had my DH been there with me, I have a feeling that the two of us would have been crying in eachother's arms in the hallway. I shared Diane's letter with Dwayne, and it has made a world of difference in how he treats me. We sat the other night on the porch, and had a very long heart to heart on this very subject. He said that it tears him up inside to see me in so much pain and know that there isn't a damn thing he can do to "fix" me, and that makes him frustrated and then his frustration comes out at me (or the dog). And of course, I feel terrible, as I was the major bread-winner in our household until I was injured, and that was while I was going to school full time and working full time. Back then, I felt there weren't enough hours in the day...now, I feel that there is too much time for me to sit and dwell on things. And it makes me crazy that I can't do all the things that I used to. My family used to tease me that I tried to be "Wonder Woman", and now I feel like a useless slob. I can't clean my home, I can't even cook dinner most days. I try to put on the "happy face" or do things that I shouldn't and then try to grin and bear it, but I always fail miserably, and that causes more frustration.

I don't think being as young as I am makes it any easier or harder, but some days it kills me that I look at my life now, and I know that barring a medical miracle, this is going to be my life for the next 50+ yrs or so...talk about depressing! I try not to think like that, but as you can understand, some days the pain and depression grab ahold of you and shake you till you're so silly you can't think straight. It makes me wonder that if this is my quality of life, than why should I bother to keep on fighting? Then I go in the bathroom and cry alone, cause I don't want hubs to know how upset I am, because he already has enough to deal with. Gosh...this isn't making any sense, is it? Like I said, I am still having a very difficult time dealing with all the emotions that Diane's presentation (and your reaction) have brought out. It has helped more than you both can know...to know that there are other couples out there who have struggled with the very same demons that hubs and I face daily, and that they have managed to make it through.

Theresa

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Life is not a journey to the grave with the intention of arriving safely in a pretty, well-preserved body, but, rather, to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming, "Wow! What a ride!"
~ Anonymous~