This year has been a year of learning for me. Obviously, when I became paralyzed my whole world was turned upside down as Every. Single. Part of my life was affected. But…over time, you find a new normal…until your spinal cord injury plays a trick on you and decides to add more changes! That has been what I have been dealing with for over a year now with less function, and much more pain and spasticity. I have already written about this several times over the past year and I am not going to again, but what I want to write about is how to handle it when your world squeezes you just a little tighter…and you feel like you can’t quite catch your breath. When your normal…isn’t normal anymore. Maybe your health is declining…or you are just at a new level you weren’t at before. Regardless, I think you will know what I mean.
I have multiple friends with disabilities, and at least in the spinal cord injury world, I have learned this past year that changes ARE part of the norm. Knowing what I was able to do, and now knowing how I struggle to do them, and feeling held hostage by your body has been SO frustrating!! So what do you do about it?
Curl up in bed. Cry. Get angry. Quit Trying. Be done with it all.
Although I have had the times of being in bed angry and crying, I have never been ready to just quit trying. I am always afraid of getting to that point and I refuse to let my mind go there. That solution just won’t work, and since ALL humans – disabled or not – have absolute value, this isn’t a good solution for any of us.
I have asked some of my friends to join me in a few helps I would love to give for when your world starts feeling smaller. Here is what we recommend:
- Know Jesus.
When you know the Lord, and you truly believe that He has planned and ordered our days, then whatever happens in your life, you can cling to the fact that this IS God’s plan right now. This doesn’t mean you like it, and it doesn’t mean you understand it, but it does mean that you can know it is truth and that you can have faith that somehow these things are working for your good. It gives you a hope that your life story has a greater purpose and the lie in your head that is telling you that you have little value is just that – a lie. You can trust that your story is valuable in the Kingdom story that God is telling through your life.
2. Keep your mind busy.
I remember in the early days when I was still bed-bound and suffering from terrible panic attacks, I would truly think something was wrong and I was dying. The problem was that I really couldn’t nail down symptoms to even go to the ER. I just knew I was dying!! I wasn’t dying but that was what I thought. Those attacks were so debilitating and discouraging on top of everything else. I asked my hubby to buy me some old funny sitcoms so I could keep my mind engaged. I was really too ill then to read much of anything or to do any type of work on my computer. So, having something to just watch and entertain me helped me. I also believe in Scripture and there is a verse in Proverbs that said a merry heart helps like medicine. I took that literally and asked for comedy. Dick Van Dyke, I Love Lucy, The Real McCoy’s, and Just For Gags on YouTube became my daily routines. And it totally helped!! Laughing feels good, and not having to think about how bad you feel feels really good! So, that became part of my prescription for health! I still absolutely love to laugh and on my worst days, I try to find something that makes me chuckle. Having six kids in this home sure help with that!
3. Take care of yourself with no guilt….
I have really struggled with feeling selfish with this one! Because of my health struggles, I felt STRONGLY to turn down almost every speaking engagement last year. I only accepted two – one in Florida because our family likes to take vacation time there and I can work it around a meeting, and one that was only a couple hours away here in South Caroline. I knew that I had to take this year and figure some things out for me. I felt strongly that God wanted me to do that and so I had no guilt about that.
However, other decisions left me feeling some guilt:
- I started taking some meds (I have tried for 9 years to stay off all meds). I felt like I was being defeated and felt guilty, but it has truly been a blessing for me to get rest at night. My neuro system had to be made to calm down at night and not spasm all night long keeping me awake. It has been wonderful finally getting to rest!
- I started using a power chair…a lot…especially outside or for longer days outside. I felt guilty that I was being lazy, but I just do NOT have the strength to maneuver independently off of smooth level floors much anymore. So, I just wouldn’t go. The power chair has really opened up more independence for me to get out and around by myself and not be absolutely exhausted and in bed the entire next day. I just want to go around singing “I’ve got the power…” when I am out now! 🙂
- I applied for a waiver to get attendant care at home to help me. This one was HUGE! I was SO emotional about it and once again, felt like I was losing SO much independence. But…I realized that I could be more of a help to my family to GET help to have things get done around here, then to try to do it all and be no count, or things not get done because I felt so guilty asking my family for all the extra help. The waiver gives me 40 hours a week for help. I hire my own attendants and they help me from whatever I need help with personally to helping with cooking, cleaning, shopping, exercising, etc. It has been WONDERFUL! My friend, Kattie, helps me and so does my daughter Briley. They get paid to help me. Knowing that they are getting paid keeps me from feeling guilty for asking for help. It has been such a huge blessing to me.
- Good doctors and Physical Therapy. The only guilt I have here is that there have been a LOT of appointments and it makes me feel like a hypochondriac! However, I cannot stress enough how important it is to be proactive with your health. Especially when you really can’t feel most of your body, you have got to stay on top of things. I have been blessed with a new neurologist and neurological PT’s who have been working with me all this year to help eliminate any more decline and to try to help get my quality of life better. It has been a slow process, but it is working. I am not being promised any improvements, but they feel confident that if we are proactive and cautious, we have slowed this down.
- Rest. Ugh. I HATE holding still, but my body demands down time. This has been one of the hardest things on me honestly. I feel SO useless when I have to rest! But, I know budgeting what I have to work with is important. One doctor told me that I have to pretend I have $200 in my account for today and I have to be wise how to spend that day. So, if I have a busy evening, I MUST rest in the day. If I have a busy day, I MUST rest that evening. If I have a busy day ALL day, I MUST have the entire next day or two to chill. I watch people…and remember…how I used to go and go and go and I feel SO lazy!! But…I just can’t. No more than I can move my legs on my own anymore, I also cannot go. I have to rest.
Do you see a recurring word here? GUILT!! But you have to let that guilt go. We have quality AND quantity of life. To have both, we must let guilt go for what we need to do. I assure you of this: PEOPLE DO NOT UNDERSTAND, AND WILL SAY THINGS. It will hurt your feelings and make you feel like a dog…only if you give them that power. I have given them that power, and it still didn’t change anything. So, I decided a better way was to just say in my head “until you have a spinal cord injury and deal with what I do (and I hope you never do) then you have no clue about my life and therefore what you say doesn’t matter a bit to me.” I can’t tell you how freeing that was!! Now, if people say something, I just smile inside my head and go on with my life. I really don’t care and I mean that!
4. But don’t lose sight of others….
Having to focus and take care of yourself so much…on a daily basis…truly can lead to selfishness. So, make sure to combat that, you find a way to be helpful to others. I firmly believe that we find purpose and value in serving others. It IS more blessed to give than to receive. Find a way to give back! In this day of online connections, there really is NO excuse not to find a way to give back.
Are you stuck in bed or inside a lot? Can you find an online community for your specific disability and just decide to be an encourager in there? Can you volunteer to make phone calls for your church or a non-profit? Can you pray with and for others? Can you do online research work? Can you do graphic design for others? Are you able to get out and about? Can you volunteer? Can you serve in your church? Can you just be the community smiler? Do you know how many people just need a smile and a kind word?
I have a couple of girlfriends who also are struggling with health difficulties. They have spinal cord injuries and they are strong Christian women. We have a private messenger thread where we stay in contact with one another, we pray for one another, we check on one another, and we encourage one another with truths from God’s Word. This is one way we can serve one another and gives us encouragement and purpose in our pain. And, we are each reaching out in our own ways to serve and give back to those around us in whatever capacity we can.
Find something to reach out and help others. I promise you that this helps.
In conclusion, they say when God closes a door He opens a window. I know that many times, we can feel that when that door closes, we are stuck in a tiny room without oxygen. But…we must remember to go open the window and stick our heads out in the fresh air. We may still be in the room, but there is still a big wide world out there.
Go open your window and take a big deep breath. It’s okay.
12 thoughts on “When Disability Makes Your World Feel Small”
What is this waiver you applied for? Reading this touched me its me. I’m so lonely.
The waiver I applied for here in SC was the HASCI (head and spinal cord injury) waiver. There are also waivers called Community Long Term Care that can get you help.
Do you mind if I ask where you live? I’m sorry you are so lonely.
Sure I’m in Ga. C5,6 have not walked in 8 years. My hands are closing up due to the nerve damage also. Where do I apply for it can you tell me please
Can you look this up and see what they say? Are you on Facebook? If so, friend me and we can connect and be friends!
Thank you, Alicia, for sharing you life. A friend of mine suggested I get on your email list – he has a similar spinal cord injury and felt I could know more of his life struggles through your posts. Like my friend Mark, your attitude helps me put life’s little speed bumps in perspective.
Thank you for subscribing! What a great friend you are to try to understand Mark better! Thanks for writing!
Alicia, Thank you so much for sharing so openly about your life. On April 21,2017, I was at a women’s conference with my church. I was the speaker for the evening session. Right after I finished, I developed a severe pain in my upper back and suddenly couldn’t feel my legs. Long story made short, I had a clot in my spinal cord and am now a T4 complete para. This has been the hardest year of my life! Without my faith in God, a wonderful husband, and some really supportive friends, I would have been crushed. Starting this new life at 55 years of age has been a challenge. I stumbled across your YouTube videos while trying to learn transfers and they have helped so much. I only just now went to this site and will follow you. Thank you again for being so transparent.
I am SO glad to meet you! I LOVE speaking at women’s conferences! I hope we can be friends and share all that God is doing in our lives. Thank you so much for introducing yourself.
Thank you so much for your reply. Through your blog and YouTube videos, i feel like I have a friend in this journey. Please keep me in your prayers as I have surgery this coming Monday to insert a baclofen intrathecal pump to control the hypertonia in my legs. Praying that will enable me to be more independent in my ADL’s, especially transfers, which the spasms make impossible. Thanks again for all you do to help the SCI community.
How did your surgery go? Is the baclofen pump helping? I don’t need the pump, but my baclofen sure does help me!
Praise report. The surgery went well and the baclofen is helping to alleviate the spasticity already. My legs are still pretty rigid, but that should be a matter of titrating the dosage. I did the oral baclofen also, but the dose of 140mg per day wasn’t touching the spasticity. My MD even added Dantrolene and that didn’t help either, thus the pump.