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 the iSpine website.

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.

quote:

April 6, 2002

Susan,

I can't believe we're at this point. You never talk to me any more unless you want something. I can't stand the fighting between you and Dad anymore. This has been the worst year of my life and there have been many days when I wish I could just pack my bags and leave. It would be so much easier to take care of just myself. That's not the way life works. Life is not always fair or easy and I love everyone too much to leave. Dad is really sick and injured. I know it's been a long time and we are tired of it. I feel like I haven't been very nice to him lately because I'm burned-out and tired. It's not easy to take care of sick people for 12 hours and then come home to someone in pain. I know it seems like he is obsessed with things, but he's trying his best. He is on heavy doses of medications.

I know you feel like you are picked on - you always have. Sometimes I think it's your perception and sometimes I guess I expect too much of you. You are gifted and talented and can accomplish what ever you set your mind to. I wish you would make up your mind to get along with Dad. You need to show him some respect and compassion. He really loves you and has a lot of good things to teach you. He would love to teach you do drive (and you really don't want me for a teacher.) It would be good for him. It would give him something to look forward to. We need another driver in the family. I don't know how much longer Dad will be able to drive. (Don't tell him I said that.) He is still holding on to dreams of being able to play soccer again. I think he will be lucky if he is pain-free and able to walk again.

I'm sorry that I'm grouchy and tired, but I am. Work is very stressful and tiring. I need some rest on my days off. Work has also been good for me. I think that I would go crazy being here all the time with these problems. At least work is an escape to a different world. I'm too busy dealing with other people and their problems to dwell on my own. I work with some wonderful people and without their help I would have quit after two weeks. I can imagine how Dad feels, not being able to support his family. When I realized that Dad wasn't going to be able to return to work, I had a really awful feeling. How can I support us? Will anyone hire me? Do I still have enough knowledge to be a nurse?

I have learned and grown through all of this. Even if Dad could go back to work today, I would continue to work. I would probably work part-time. I NEVER want to feel like I can't support myself again.

I have given you my love and support for years and have many wonderful memories (beach days, walks in the rain, birthdays, swimming, playing with pets, art, dance, gymnastics, etc... ) Some not so wonderful memories too. (chicken pox, concussions, teeth pulled, mono...)

I need your love and support now.

Love,

Mom

PS. Sorry about the writing. I'm too tired to recopy it. Please don't share this letter with anyone else. It's meant to be private.

Thanks Mark, Diane and Susan for your openness, loving and caring for others by sharing your family�s darkest days. In the mist of finding a solution for our pain and unhappiness we inflict pain in those we love the most. The amazing thing that comes from this horrified experience to me is that our love ones are stronger that we are and take so much from us and stand by our sides even when we are so unbearable. Love is so incredible and come in all types.

Thanks to Mark and family for sharing your humanity with us. We all benefit from the struggles you've gone through. Your success is a success for us all.

Mark
You are so lucky to have Diane for a wife she
is an Angel. Again I'm so glad to know you and your family.See u soon
chuck

As I said in a note...Diane..been there, done that, no fun!

After 14 years of my husbands back pain, his subsequent depression and eventually mine....you realize life doesn't always turn out the way you expected, in both pain and pleasure...what matters is what you do with it...and like children..there is no instruction manual for this one!

I've written a letter like like this to my oldest son...my three sons were raised in this kind of difficult situation..and praise God they are better off for it.....very mature and empathetic..there is light at the end of the tunnel.

Thanks Diane for having the guts to share your pain and vulnerability.

Dear Mark, Diane and Susan,
Thank you so much for sharing this very intimate and poignant letter. You are an inspiration to all of us. Yhank you for your dedication. You have helped so many people.
Blessings, Shermaine

To all the spouses of back pain sufferers:

We need your love and thank you for your devotion, patience and support!

Mark,Diane&Susan,
i am also very touched by your family and the support you have for one another. After meeting your wife in the california meetings i knew she was a special lady, you are one lucky guy!!
i look forward to meeting you for lunch when you get back in town,it's been way to long since the last time.
gary

Dear Diane, thank you for sharing your letter. The jury is still out on what my 14-y/o-daughter thought tonight on our dinner visitation, apparent reflection, no comment. She seemed fixated on the beginning paragraph. This was, as I know, her first experience of sharing chronic pain as a family supporter. I can only hope she experienced the positive effect of not being alone.

Being a caregiver is exhausting. I'm not the "group therapy" type but have considered gong to a caretaker's group.

As a single mom going through this hell on my own, unable to work but knowing there is no one to support my family but me, I have to confess that I feel jealous and sometimes even a bit resentful of the "spineys" who have a life partner to share the burden. Just try being both caregiver and patient! Thank God for antidepressants...I would have killed myself without them. Maybe there's a place on this site where single parents share their thoughts on what it's like to raise kids while being crushed by chronic pain and financial crisis. If there is, I must have overlooked it, since I can't stand to spend much time on line. I sure could have used the encouragement. Somehow, I've survived anyway - and now it's almost time to grab my passport and focus all my positive engergy on letting Dr. Zeegers work his magic.

Dear Karen,

I like your candor! It is good for other "spineys" to hear that it could always be worse, (like my husband ....).

I have also been a single parent during my own serious illness in the past, and indeed a caregiving spouse and parent is, in essence,a single parent, supporting not only children but another adult as well. I have offered to help bring more of this to light, no response as of yet.

I admire your strength and tenacity....doing all of this while experiencing what I believe is the hardest job in the world.

Yo Go Girlfriend....there are many that are with you in spirit...just because you can't see us doesn't mean we are not there.......

Please e-mail me and let me know of your progress, Been There, Done That, (in my own way) NO FUN!

Anita

Karen... thanks for reminding me that there is an even greater need for caregiver support than I had realized.

I'll be looking for help in determining what I can do to improve support for the caregivers.

Mark

Mark,

Check your e-mail! Help is being offered!

Anita

Thanks for the perspective Karen! I get WAY too immersed in my own small problems sometimes. Good luck with Dr. Zeegers and please let us know how you do. I had single level ADR with hime at L5/S1 and am doing okay minus of few lingering problems that probably could have been avoided if I had gotten the ADR sooner. Feel free to PM me for any info you might want about ways to "live cheap" in Munich while recovering from ADR. After five surgeries at the AK (one back, four knees) we've learned a few tricks.

Best wishes,
Laura