Being paralyzed was never part of my plan. I remember vividly feeling horrified when the doctors used the word paraplegic to describe me. It seemed like such an ugly word and I didn’t want it to be part of my life. I wanted to be described as kind, intelligent, fun-loving, daughter, sister, college student, traveler, stubborn or southern - just not paraplegic! If you acquired your disability later in life I’m sure you can relate to these feelings.
In the 1960s, renowned psychologist Elizabeth Kubler-Ross defined the five states of grief
. They apply not just to losing a love one, but to losing anything that you once considered essential to life, including your own mobility. These feelings can be experienced in any order and sneak up on you when you’re not looking. This is the first in a five-part series in which I’ll outline how I encountered the five series of grief – denial, anger
– before arriving at acceptance.
I have been a licensed clinical Social Worker (LCSW) for more than 20 years. Through both my professional and personal experience I have learned that not everyone goes through all five stages. One stage can last for many years, and there is no prize for getting through these stages faster than someone else. Unfortunately, there are also no magic tips for how to move through them with less pain and fatigue. It is an emotional journey that everyone must go through. I can share with you what I have learned from my experience as a social worker and a paraplegic (there’s that word again!).
I want to be clear, in the early stages of being disabled you don’t know how much movement you might regain. I am not suggesting you give up hope of healing or possibly walking again. When I write about getting through the denial phase, it doesn’t mean you must accept never walking again, it means accepting where you are right now and taking care of your body in its current condition.
For me, denial hit first. I remember asking my physical therapist if we could rent my wheelchair, rather than purchase it. I didn’t want them to judge so quickly that my paralysis was permanent. I was too young at the time to realize I was grieving the loss of the use of my legs. My grieving process took many years. It was three years before I gave away my bicycle I had rode all over the LSU campus before I was shot. After all, it was MY bike and I planned to ride it again one day.
Not wanting to be described as a paraplegic and holding onto a “walking person’s” bike for three years are two examples of my denial. I believe that with sudden and catastrophic change, a certain level of disbelief is protective. The way you grieve is as unique as a fingerprint. There is no wrong or right way to adjust to the fact that life has changed and will never be exactly the way it was before.
Here are some tips for getting through the early stages of transitioning to a new way of life and dealing with denial!
1. Listen to your medical team, even if you believe you will walk again.
In the early stages of a new disability nobody really knows what the final phase of your recovery will look like. You may beat the odds and walk again one day. In the present, you must learn to care for your body in its current state. That may mean learning how to safely use your wheelchair, intermittent catheterization
, bowel protocol and preventing skin breakdown. Learn these things at the start to avoid ending up back in the hospital, which will delay and further recovery of function.
2. Keep a journal, notebook or voice activated recorder by your bed to record the information you need to remember.
When you are first injured or are diagnosed with an illness you may just feel like you are going through the motions of your physical rehabilitation. I suggest keeping a journal, written or voice recorded, if possible. It helps to have a place to get out your emotions, and to keep track of important information related to staying healthy. It is impossible to remember everything when you are in pain or emotionally overwhelmed. If you can’t take the notes or use a recorder, have a friend or family member help you. I kept a journal in the first year after the shooting and it helped me so much. Getting my feeling out and on to a sheet of paper was easier for me, but also had great healing powers.
3. Create a good support team if you don’t have family available.
In the early stages of a new injury or diagnosis having a good support system is important. I was fortunate to have supportive parents, grandparents and extended family to take care of moving my things out of my second story apartment, withdrawing me from college and working with the medical team caring for me. You may live far away from family. When friends ask you what they can do, tell them! This is not a time to be fiercely independent. You will need a lot of support during your transition. Don’t be afraid to reach out. Many friends would love to be there for you, if you allow them.
4. Join a support Group Locally or Online
Many local rehabilitation hospitals have spinal cord injury, brain injury, stoke, MS, ALS or Parkinson’s support groups. Call your local United Way if you can’t find one, as they often have a local list. I also highly recommend going online to either United Spinal Association, the Christopher and Dana Reeves Foundation or other organizations for your specific diagnosis for additional resources. United Spinal has a peer support network
that you can sign up for online, and there is also Reeves Connect
. Talking to other people who have been through similar experiences always helps.
If you aren’t ready for a group setting, there is also a good book I would recommend, Life on Wheels,
written by Gary Carp. He does a great job explaining the early stages of a disability and offers tips for coming to a place of acceptance.
5. Get lots of sleep and eat heathy food.
While people may want to visit you in the hospital, I encourage you to limit the number of visitors you have and set a very early bedtime. Ask the nurses or your family to put up a do not disturb sign. Getting eight to 10 hours of sleep will be necessary for you to get the most out of physical therapy the next day. (Sorry if I sound like your mother!)
If people bring food, request that it is not fast food or candy. Proper nutrition will give you more energy. You will feel better physically and mentally. It is easy to want to find comfort in food that isn’t good for you. Eating healthy protein and lots of vegetables can help prevent skin breakdown and urinary tract infections (UTI’s). Studies show that drinking at least eight eight-ounce glasses of water a day can prevent UTI’s. Any secondary illnesses you can prevent will help keep you physically and mentally moving forward with your new life. The mind/body connection is real and if you physically feel good it is so much easier have a positive attitude.
These are just some of the ways I dealt with denial when I become newly injured. I am grateful for my extensive support system, they helped me overcome my denial and start to live a life possible. But it wasn’t all easy. At times, I would also get angry – the second stage of grief. More to come on that stage next month!
I would love to hear about your experiences during the early stages of your hospitalization and recovery. Please email me or contact me via social media.