On June 10, 2009 my husband Abel went into the hospital for back surgery. I was so nervous, "Back surgery!" I thought to myself. "One wrong move and he could be paralyzed.", I agonized. Never showing my fear to my dear husband, who had been in pain for eight years and could barely walk as it was because of it. He just wanted to be back to normal again. All he wanted was to be able to roll around and wrestle with our boys. We had just had number two, Jacob, who was six months old and then there was our forever energetic three year old, Nicholas.
Nothing could prepare us for the journey we were about to take.
The surgery went as planned and the surgeon assured us that even though the full recovery was going to be about two years, he would eventually feel like the man he used to be, before the herniated disk which led to his first surgery at the age of 23, which led to a total collapse of the disks. After living with this horrible pain for eight years he was so happy that there was a light at the end of this tunnel. Of course there would be much more pain to deal with before it was all over.
The day he was being discharged from the hospital he had mentioned to me that his toes felt a little numb. Thinking it was just a circulation issue from being in a hospital bed for a week we were slightly concerned, but willing to see if it would right itself. Abel really just wanted to go home and start his recovery.
The next day, Abel told me that the numbness wasn't going away and in fact, it was getting worse. "What the hell is going on?!" we said to ourselves. The surgeon had us come back to the hospital immediately.
It took a few days and a spinal tap to be sure, but what was going on was Guillain-Barre. Not directly related to the surgery, Guillain-Barre is rare auto immune deficiency that causes the immune system to attack the nervous system. We were told that he would slowly be paralyzed from toes up. They didn't know how far the paralysis would go. It often is so severe that it paralyzes organs and life support would be needed. They don't know a lot about it, just that it usually comes about after having a virus or viral vaccinations such as the Swine Flu vaccine. They were unsure in Abel's case because he had not had either. It's unknown why some people get it and others don't. It always eventually reverses it's self, but the recovery time is never known. We were told it could take anywhere from 6 weeks to 2 years. The only thing they have seen really help is a plasma exchange. It doesn't stop it but they believe it speeds up the recovery process.
I was dying inside and couldn't even imagine how Abel was feeling about this diagnosis. My husband is a strong, energetic man. I can never get him to sit still and now he would have no choice in the matter.
It took ten days to get to his full paralysis which luckily was contained mainly to his arms and legs. He was close to life support one evening but fought it off. He ended up in ICU for two weeks just to keep a closer eye on him. Total, he spent 6 weeks between 3 different hospitals and another 6 weeks in a rehab facility, where he reached his lowest point mentally. We were able to pull him from the depths of his dispare and he began to see the sunshine again.
After a 24 hour stint at the rehab hospital, where I had to show that I could do absolutely every thing he needed done, he was allowed to go home. That's when the real fun began.
We had a hospital bed set up next to our bed. By it's side lived a hydrologic lift and harness for the purpose of getting him in and out of bed, to and from his wheel chair. The lift proved to be much easier to maneuver in the hospital(Damn carpet!). That lift became my nemesis and I couldn't get rid of it fast enough. A physical therapist came to work on Abel's muscle tone and essentially teaching him how to walk again.
My husband had become as helpless as a baby, diapers and all. All I could think about was how emasculated he must feel. We had only been married a little over a year. This was quite a test for our marriage. I was working full time, taking care of two small children and a now I had a paralyzed husband. Oh yeah! We had also started building a house about a month before the surgery. Shortly after he came home we had to cancel the contract because we just didn't know what the future was going to bring our way. The house was completed just two weeks later and shortly after that it was sold to another family.
It was a struggle to say the least. I had my Aunt spend a couple of hours in the afternoon with him and I took the evening shifts. His mother would also come into town from Austin, every other week. It was the longest time of his life, he said. For me it was all a blur. I set myself on auto pilot to get through the day. I stuffed all my emotions down as deep as I could so that I could be the rock my family needed. One night, before he came home, I woke up in the middle of the night, pillow soaking wet. I had been crying my eyes out in my sleep. It kind of freaked me out and then I realized that it was just my body trying to let go of this worry and stress it was carrying around.
Eventually, he started making serious progress and in mid-October he took his first steps in four months. We could both breath a sigh of relief. It was the best day of our lives. He still had and has a long way to go for a full recovery. He still walks with a cane and hasn't gotten feeling back in his toes (this maybe permanent). He is still in a great deal of pain from the original back surgery but not as bad as it was during the full on Guillain-Barre which, even though you can't feel your extremities, there is massive amount of nerve pain associated with it. His toes on one foot are curled up and will not straighten out by themselves, so we have been told he will need surgery soon to correct that. It will involve putting pins in his toes to keep them straight.
He is currently on long term disability through his old company that basically laid him off after three months of this ordeal. He is going back to school while he can't work, but even that takes a toll on him most days. We stay optimistic about the future and know that things could have been much worse. He has been very strong through this whole thing and I honestly don't think I could have handled it as well.
As a family we have pulled through the storm quite well, but I can't help but wonder what the next disaster will be in our lives.
