Grief is a real part of living with paralysis which means as a caregiver it’s a real part of your life as well, especially if you are a spouse, parent or someone close the person you are caring for. There was something happened in each person’s life that resulted in paralysis. That loss might have occurred at birth if a child was born with some type of disease or birth defect that caused paralysis. This would create a loss of the hopes and dreams a parent has for their child to live a normal and healthy life. Maybe the loss was a result of a car accident, a bicycling accident, medical error or a stroke. This type of loss shatters the vision and expectation that someone had for their future. It changes just about everything. We must remember that the person we are caring for will always be mourning this loss no matter how it occurred, and we ourselves may be mourning the loss as well.
I am not going to write about the stages of grief and what to expect or how to deal with those stages. I am not a doctor or therapist, I am a wife who is also a caregiver and I will share with you how we have dealt with grief on our journey in hopes that is might encourage you on your journey.
It’s hard to say when grief really started to sink in for me, but I could see it almost immediately for my husband Bill. One morning he got up, fully able bodied and healthy, ate breakfast and played with the kids for a little bit before getting ready to leave for a monthly mountain biking adventure with his friends. I think it was around 7:30am when he left that morning. Neither of us could have possible prepared ourselves for the drastic change our lives would take in less than 3 hours. I got the phone call every wife dreads. He said, “honey, I got hurt but I am okay. I just can’t feel my legs.” All that I could say was “what are you talking about?” over and over again. After I hung up the phone I fell to my knees and called my kiddos to come pray with me. They were already worried because mommy was crying. There, on the floor of our kitchen, I held my 5 children (3 biological and 2 foster) as closely as I could and prayed…begged really, for God to heal my husband and for him to be able to feel his legs.
When I arrived at the ER where he had been life flighted to about an hour earlier, I was ushered into the room where he was laying on a gurney. They needed my permission and signature to say it was okay to operate on him, to decompress his spine. I just kept asking him if this was okay and did he really want this surgery? A little back story…no pun intended. Bill was a practicing chiropractor when he was injured. He had told me countless stories about failed back surgeries and how he would strongly recommend his patients exhaust every natural option before turning to surgery. So, to hear him say he wanted to have back/neck surgery was a surprise to me. You see, he understood the severity of his injury in a way most people probably don’t because he had studied the human spine for 3 ½ years in chiropractic school. Which is why when they told him he had a burst C7 vertebra that was compressing his spinal cord, he knew surgery was necessary.
I think Bill’s grief started when he woke up from surgery and his first night in the ICU was like a living hell. He called over and over for a nurse and no one would respond. He couldn’t use his hands, couldn’t move his body from his chest down and he was in a neck brace that wouldn’t allow him to move his neck or head. He was trapped in a hospital bed with machines all around him beeping and no one coming to help him. Every day he spent in the ICU was harder than the day before it, he was sinking into a deep sadness over his loss of ability and because he didn’t feel well. He had always been a very healthy person, he didn’t even take Tylenol or Ibuprofen for pain. Having his body pumped full of all kinds of meds was very hard for him. They even tried putting him on anti-depressants for a time but as soon as he was well enough to start asking what drugs they had him on, he started asking for them to be lowered and taken away.
Once Bill finally made it to the rehab hospital there was a different kind of grief and mourning of the loss of his ability that started. Now he had daily therapy that required him to get out of bed and into a wheelchair. The sheer fact that he couldn’t do any of it on his own was very hard for him. He was in mourning but trying to do all he could to help his body heal physically. He developed a pressure ulcer in the ICU that opened up the day he was being transferred from the ICU to the rehab hospital. We later found out the hospital should have had him on a “dolphin bed” that changes pressure every 5 minutes to protect his skin. The ICU hospital of course claims that they met the minimum requirement by providing a standard hospital bed mattress. Don’t even get me started on that one. But dealing with a pressure sore for the first 10 months after he was injured also created some deep sadness and depression.
The first-year post injury was hands down the hardest for both of us, although year 2 wasn’t amazingly better, it did start to get a little easier. Once my hubby dealt with his new reality, got his pressure sore to heal and was able to start doing active therapy several times a week, his mental and emotional wellness started to heal. It was a very slow process but he kept moving forward little by little. He had to come to terms with his injury and the loss of his previous ability. He then had to accept the new life and remaining ability that he had and learn to be thankful for those things. Only by God’s grace was he able to do any of it. On his own, he would have given up, medicated himself and waited to die. But because he knew God had a purpose for everything and everyone, he knew he couldn’t give up. My husband is an amazing man of God and he fully takes God’s command to provide for his wife and family to heart.
As I mentioned at the beginning of this blog post, my husband was a practicing chiropractor when he was injured. He was very passionate about taking care of his patients and helping them to get well. In fact, one of the first things he said when he woke up from surgery late Saturday evening was “I need to get back to the office to take care of my patients on Monday”. As the first year passed, he realized that he would no longer be able to practice chiropractic and the interim doctor we hired was able to keep the doors open, but his thriving business was barely above the red. We kept the practice going a good year longer than we should have because he just was not ready to let it go. When we finally shut the doors on Breath of Life Chiropractic it was devastating for my husband. Even though he knew we couldn’t afford to keep it going, it was his dream and closing the doors was just another reminder of all he had lost when he was injured.
My husband grieved the loss of his practice…but he never gave up hope. He knew he needed to find a new purpose, a new way to make a living but he didn’t know what he could possibly do. (Here is a blog post he wrote about it.) A very good friend of his that is also a chiropractor asked my hubby to write some blog posts for him since he didn’t have the time and he knew Bill would be able to write a great article from a doctor’s point of view. What started from writing blog posts for one friend, over the past 5 years, has become a highly successful online marketing company. Upper Cervical Marketing works with chiropractors and helps them get connected with sick and suffering patients that need help. My amazing husband taught himself everything he now knows about online marketing through relentless hard work and unbelievable determination.
Overcoming grief is a process that can’t be rushed and can sometimes feel overwhelming. As my husband’s caregiver I have had many emotional ups and downs over the past 7 ½ years. There are days when the harsh realities that come with a life of paralysis consume us. God has been gracious to us in that most of the time, one of us is on a mountain when the other is in a valley and we are able to help lift each other up. There is no harm or shame in having down days, feeling sad, crying and questioning why. However, it is vital that we choose not to stay down for too long. My hubby and I lean heavily on our faith in Jesus to pull us out of the pit of despair. We trust that God has a purpose for our lives and we know that if we stay in the pit of despair, which is ultimately where the enemy of our souls would like us to stay, then God can’t use us for His plan and purpose. We have chosen joy in the midst of trials and it has made all the difference:
“My brothers and sisters, you will have many kinds of trouble. But this gives you a reason to be very happy. You know that when your faith is tested, you learn to be patient in suffering. If you let that patience work in you, the end result will be good. You will be mature and complete. You will be all that God wants you to be.” James 1:2-4
If you or the person you are caring for feels sad and depressed and feel you are unable to pull yourself out, I would encourage you to reach out for help. Seek help from friends and family, find a local church to connect with where you can receive counsel and encouragement or find a reputable grief counselor that can help you deal with your grief and work through your emotions until you are able to choose joy. Everyone handles it a little differently but there is hope for you to overcome your grief and realize new dreams for your life after paralysis.
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