September 1 will mark thirty years since I contracted transverse myelitis. TM is an auto-immune disorder in which a virus attacks the spine, triggering the body to attack not only the virus, but the myelin sheath around the nerves of the spine. An attack low on the spine might bring just a little numbness and tingling. But an attack high on the spine can result in quadriplegia, ventilator-dependency, and even death.
I was affected in the middle, in the thoracic region. My symptoms began with a vague feeling of numbness in my left hand, like I had slept on it wrong. Within three hours, my left arm was numb up to my shoulder as were both legs up to my lower torso. I couldn’t walk on my own. I was having trouble going to the bathroom.
I thought I was having a stroke. That’s the only thing I knew of that would cause parts of the body to suddenly go numb.
As it turns out, a number of ailments can cause sudden numbness. There was no one test to diagnose TM. Instead, tests were performed to rule out any other possible related illness. That took eight days in the hospital.
I was sent home with a few prescriptions and a plan for physical therapy.
Thankfully, I progressed from a wheelchair to a walker to a cane to walking unsteadily on my own over the course of a few months. My ability to walk has improved, but I still can’t run, jump, hop, or walk very well on uneven ground. Oddly, my balance is often affected the most when I am standing still with no support. This is due to TM’s effect on my proprioception. I’m usually fine if I can hold on to or lean against something stationery.
I am not as numb as I was, but I still don’t have full feeling in my left hand or lower legs. I have odd little nerve sensations–feeling like something is touching me when it isn’t, feeling a sudden hot sensation where there is no heat, etc. I can’t wear my wedding ring because it causes a pinging, funny-bone sensation in my hand.
But overall, I am thankful that I recovered to the point of being able to function as I needed to, to take care of my family, and to lead a relatively normal life.
I’ve been jotting down several things I have learned through this experience, and I thought I’d share them with you. I know many of you are going through physical trials or have in the past. Though our details might vary, I hope you’ll find camaraderie and encouragement here.
The unsteady trajectory of healing. It seems that often healing is a one step forward–two steps back process, feeling better one day and worse another. Often in the first couple of years after TM, I felt my symptoms were increasing to the same point they were in the beginning. Though TM is usually a one-time event, some people do have more than one attack. But repeated attacks are also signs of multiple sclerosis. So that specter was in view whenever I felt worse.
The hidden work of healing. Sometimes assessing healing is like watching paint dry. There doesn’t seem to be any progress day by day. But over time, healing gradually takes place unawares, until finally one day we can see definite progress from the previous week or month.
Riding the waves. When my husband and I were taking childbirth classes, our teacher invited a couple from her previous class to come in and share their childbirth experience. The new mom said something like this: during labor, when she wondered how many hours she was going to have to do this, she felt weary and defeated. But if she only concentrated on one contraction at a time, she was able to get through them better. She likened it to riding each wave of a surf as it came in.
That illustration has stayed with me all these years through many applications. When symptoms flared up or I had a bad day, I thought, I only have to deal with this day, this moment.
The value of rest. The first few months after TM, if I wanted to go anywhere, I would have to rest up the day of the event. Afterward, it wasn’t a matter of making myself rest: my body crashed and I couldn’t have done anything else anyway.
But I noticed I hardly ever had a cold or any other sickness during that time. I realized that maybe rest was nipping any other colds or viruses in the bud. When I began having heart rhythm issues, I couldn’t take decongestants any more. So rest and Tylenol and cough drops at the first sign of a cold became my go-to treatment. Most of the time, I got over them much faster than usual.
The need to strive. This sounds like a contradiction to the need for rest. It’s hard to balance sometimes. Usually we don’t know we’ve overdone it until it’s too late. But we don’t generally make much progress unless we stretch ourselves beyond what’s comfortable.
The value of an ordinary day. When I was in the hospital and recovering at home, one of the things I most wanted and missed was just an ordinary day like I’d had and hadn’t appreciated before.
The value of my work. As a homemaker, I can sometimes feel my work is not as important as other people’s. But when I couldn’t do my work and saw the extra pressure it put on everyone else to do what I always did, it helped me realize that I did have a helpful contribution to making family life go smoothly.
The value of help. People from church brought meals, cleaned bathrooms, babysat, prayed, sent cards, and let us know they cared. A group of men installed a handrail on the stairs and safety bars in the bathroom.
People often wonder what to do to help in a crisis. It varies according to the person and the situation. But I’d encourage praying about it and then doing what the Lord lays on your heart. For instance, one lady brought over a puzzle, and she and my oldest son sat and worked it at the kitchen table while we talked. We’d had to go back and forth to so many doctor’s visits, either taking the kids with us or to babysitters, and that quiet activity was a balm. Yet if someone had asked me what I needed, I never would have thought of a puzzle and quiet conversation.
The mental cost. This is something I didn’t realize until a few years ago. I was reading of a woman who had been in a horrific accident where she was hit by a bus, flying through the air until she landed on the street with multiple broken bones. On the one year anniversary of her accident, she wrote that she had healed physically, but still suffered triggers that affected her mentally and emotionally.
That statement was like a light bulb coming on in my mind.
For maybe a year or two after TM, I suffered from panic attacks. I didn’t tell anyone. This was in an era when many Christians were adamantly against psychiatry. We had seen a documentary about the dangers of Xanax. I was afraid of being shipped off to a psychiatrist and being put on psychotic drugs.
In fact, I was given Xanax while in the hospital, but no one ever explained why. I don’t remember that it had much of an effect. But I didn’t want to continue it.
So even as I healed physically and enjoyed time with my family and getting back to church, I didn’t realize that I was still shaken up mentally and emotionally. I think part of it is that the world no longer felt secure. We know that anything can happen any time–but when it does, life doesn’t seem safe any more.
In truth, this world was never meant to be our safe place. Our shelter and security comes from God. But it takes a while to remember that, or to apply it in new ways, when our lives are severely shaken.
Mental and emotional healing may take just as much of an up-and-down trajectory as physical healing and may leave us with limps, scars, or tender places.
Things evened out over time, but I wish I had talked to my neurologist or primary care doctor.about all this while it was going on. Thankfully, we understand mental issues better now than we did then.
Lessons from limitations. I’ve written about this before, but one of the biggest lessons was that even though I couldn’t do everything I had done before, that didn’t mean I couldn’t do anything. We all face limitations of some kind–physical, financial, relational, season of life, etc. Our limits don’t hinder our ministry: they just define it.
Happy stress is still stress. A nurse shared this with Mittu when Timothy was in the NICU for 10 1/2 weeks. It rang a bell with me, too. Even with events I am dearly looking forward to, I have to pace myself.
Faith during uncertainty. For the first couple of years after TM, I never knew what my symptoms and capabilities would be any given day. I felt bad when plans with the family had to be canceled, though they were understanding. I didn’t know how long symptoms would go on or what level of recovery I would eventually reach. I was used to getting medical problems fixed, either with medication or a procedure. Living with the unknown for so long was wearing, but it caused us to rely on God moment by moment and trust Him for the future.
The joy of finding others. We got our first family personal computer about six weeks after my diagnosis, and transverse myelitis was the first thing I looked up. I found an email subscriber list of TM patients and caregivers. No one else I knew outside of the medical community had ever heard of TM. To find people who knew what I was talking about, who could answer questions and compare notes, was a godsend.
Dealing with “what ifs.” We lived in a split-level house, and I couldn’t use the stairs at first. Would we need to move? I had three sons, the youngest just two years old. Would I be able to take care of them? We had just started our second year of home schooling. Would I be able to continue? About a third of TM patients don’t regain anything they lost at onset. What if I didn’t? Or what if it got worse? What if I developed MS? What if the doctors missed something? Living with uncertainty isn’t comfortable, but God’s Word assured me He was with me and cared for me. I didn’t know what the future held, but I could trust Him to meet my needs and lead us day by day.
It’s okay to have bad days, to cry, to lament. I used to think that in order to be a good testimony, I had to project “victory” and positivity all the time. That’s not only inauthentic, it’s unrelateable. In the psalms, we see people pouring out their confusion, questions, anguish, physical, mental, emotional, and spiritual pains. Eventually they remind themselves of what they know to be true about God’s character and ways, and they rest in Him even though the circumstances may not have changed.
The comfort of Scripture. Finding help and hope in the Bible was not new to me, but God’s Word helped me in special ways during this time. For example, the night before I was scheduled for an MRI, nearly every medical person who came into my hospital room asked me if I was claustrophobic. I didn’t know–I had never been in a position to feel claustrophobic before. I wanted to tell them that their questions were making me feel claustrophobic! I was told that they could give me something to calm my nerves, but it needed to be done a certain amount of time before the MRI. I opted not to take anything.
They stressed to me the importance of being still in the MRI machine. Before the MRI, the verses from my Daily Light on the Daily Path devotional were all about being still: “Sit still, my daughter” (Ruth 3:18); “Be still, and know that I am God” (Psalm 46:10); “Commune with your own heart upon your bed, and be still” (Psalm 4:4), and others. Those words kept running through my mind while I was in the MRI machine, and I remained calm. I even dozed off.
In the following months, other verses stood out to me. “The Lord strengthen him upon the bed of languishing: thou wilt make all his bed in his sickness” (Psalm 41:3); “In all their affliction he was afflicted, and the angel of his presence saved them: in his love and in his pity he redeemed them; and he bare them, and carried them all the days of old” (Isaiah 63:9); “And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me” (2 Corinthians 12:9), “Though he cause grief, he will have compassion according to the abundance of his steadfast love; for he does not afflict from his heart or grieve the children of men” (Lamentations 3:32-33), and so many others.
How about you? What has God taught you and how has He helped you in illness?
(I often link up with some of these bloggers.)
Stray Thoughts 
Thank you for sharing your story. I’m dealing with a particularly severe bout with fibromyalgia right now and your post here is so needed. There are lessons we learn in every situation and I’m so thankful for God and for friends who pray.
I’m sorry about the bout of fibromyalgia. I hope it doesn’t last very long. Amen to being thankful for God and friends who pray.
Oh my goodness! I didn’t know about your journey with TM. Thank you for sharing your story. I need this message today and every day. Doctors are still trying to find out the cause of my pain and numbness and tingling on the left side of my body. Your words bring me hope and encouragement. Thank you so much. Have a blessed day!
I hope they can find out the source of the trouble soon. Having a specific diagnosis is so helpful. But I hope you can get some relief even more. Praying for you.
This is an excellent post Barbara. I read the entire thing at 7:00 a.m. this morning. It reminded me of a journey I went through with empty nest syndrome and fell into depression. I wrote a blog post about it (for someone else’s blog). I will send it to you when I get a chance.
The main lesson I learned was surrender to God’s will . The old life was not coming back so I had to face that and forge a new life. I fought with God about it for a year and a half. I could have been happier sooner if I had known this. Another big lesson God taught me was contentment.
I still have days I struggle because one daughter and family is 500 miles away and the other daughter and her family are 2,000 miles away, but I’m grateful that they are godly young women married to very good men and are doing a great job raising my grandchildren.
This is not how I imagined my sixties and the soon-to-come seventies to be. But I have to surrender to the reality. It took me a couple years to find out what I even liked to do because I had been home schooling 13 years.
One good outcome of this is that when I had breast cancer in 2017, the lessons I learned really helped. I surrendered immediately. I had prayed that I wouldn’t respond with rebellion and discontent to the next trial and God answered that prayer!! It was like I was being transported on angel clouds through the whole treatment. 😇 I didn’t want to be stubborn a second time!
God Bless, Renee
These are great lessons! It’s so true that what we learn through one situation will help us trust and surrender in future situations. I’d love to see your post about empty nest syndrome. It definitely wasn’t an easy transition. We have found some perks, though. 🙂 I’m blessed that all of mine are nearby except one, and he comes twice a year.
My husband and I lived 1,000 miles away from my parents and 2,000 miles away from his–before texts and FaceTime and such. I think we talked long distance about once a month–remember when you had to call certain hours to get the lowest rates. I don’t know how my mom stood it, except that she had four of my sisters at home for several years more after my brother and I moved out.
I am glad that you are better now. The sermon this morning at church was on how God uses our weaknesses and not our strengths. Your post is very fitting.
That’s a hard lesson to learn, or to keep relearning. We so want to be strong.
I didn’t realize the extent of TM, and as I read, I could well imagine why you would have experienced panic attacks!
Looking back, it makes sense to me now, too. At the time, I kept wondering what was wrong with me.
The sermon at our church today corresponds with what you wrote. Naomi suffered but God cared for her. Commit to go through your trials with God, not try to get away from them the easy way.
I am glad you were able to find answers about your illness and ways to help you heal. I never knew any of this from our years of ‘knowing’ each other in blogland.
That’s my biggest issue with any kind of suffering–wanting to get out of it as soon as possible. I try to seek what God has for me in it but still tend to hope for relief and a short stint.
What a helpful post, full of so much “meat”! I’m so sorry you have to deal with this. I kept thinking of Paul though, and his “thorn.” I guess we all have something, but this sounds like a biggie. I thought of my dad. After his stroke, which was about 6 years ago affecting his left side, he’s always said that side is “different”–feels like a blood pressure cuff is constantly inflated on that arm, etc. I do hope that research is ongoing for TM and that advances keep happening. In any instance, I appreciate you being a strong Christian in your attitudes and viewpoints about this “thorn.” Praying for you, my friend.
Thanks so much. That’s interesting about your dad’s arm–I described mine that way, too. There was a band of pain like a too-tight blood pressure cuff at about that level on my left arm. Some asked me how there could be pain if it felt numb–I don’t know, I just knew that’s how it felt. Thankfully, that band of pain subsided over the years.
I do think we all have some kind of thorn, whether it’s physical, financial, relational, or what. Nancy DeMoss Wolgemuth says anything that makes me need God is a blessing. And Joni Eareckson Tada often says God permits what He hates to accomplish what He loves. I love the KJV translation of Lamentations 3:33: “He does not afflict willingly, Nor grieve the children of men.” That helped me with the thought that God is deliberate and intentional in what He allows.
I had never heard of TM before reading about your experience. It sounds like a lot to deal with, and I’m sorry that you’ve had to face all the fears and uncertainties that came with it. Any of the physical ailments that come our way can feel like huge challenges when we’re in the middle of them, but some – like TM or cancer or major chronic illnesses – are bigger challenges for sure. All of the lessons you shared are valuable and things we can all learn and apply to the various trials we have. Looking back I can see how I’ve learned and experienced some of these in dealing with the limitations of my arthritis and the mental/emotional struggles of our very abrupt move and empty nest experience. Your openness in sharing what you’ve learned is a blessing and encouragement. Thank you.
Thanks so much, Kym. I didn’t know you had arthritis. We had a big move with two kids leaving the nest at the same time several years ago. A phrase from the hymn “Be Still My Soul” was a mainstay for me: “In every change, He faithful will remain.”
I so appreciate your openness. I’m still (been THREE YEARS) dealing with upper back/cervical spine issues. Pain is daily although some worse than others. Glory to God the 24/7 headaches called Cervicogenic headaches (that NO medication other than strong opiates or anti depressants get rid of) have really eased up thanks to prayer, lots of chiro and pt visits and home stretches/exercises. But for some reason the Lord hasn’t healed my upper back pain. I give Him thanks for sustaining me through Scripture, prayers of friends, and for giving me relief from the headaches minus meds I didn’t want to put in my body. Dave and I are trusting Him for healing but meanwhile, I try to use wisdom, do what the Pt etc says, and take each day moment by moment. I truly don’t know what I would do if it wasn’t for the comfort I find in Scripture and in talking to Jesus.
I was so used to medical problems getting fixed, it was a different experience to deal with something sustained. I knew people had ongoing ailments, but I had never experienced that before TM. And now with getting older, there are all kinds of things. My preference is for God to deliver me out of difficult situations–but often He leads and sustains us through them. I hope and pray your pain can be relieved soon. I’m thankful for God’s grace you’ve experienced along the way.
Oh I am so sorry to hear all that you have been through but I definitely agree with so many of the lessons your illness taught you. I was just telling my friend the other day that healing from a major surgery takes time and that it will feel like a one step forward one step back kind of thing particularly as you tend to overdo it on the days you feel good.
So often we don’t know we’re overdoing it until we’ve already overdone it. We can get discouraged when it seems like we should be further along in our healing than we are. Maybe that’s another lesson–healing often takes longer than we think it will.
Wow, Barbara. We never know what others are going through around us, do we? Thank you for sharing this. I love what you said about finding camaraderie and encouragement in our similarities even though the circumstances might be different. So many of your points resonated with me. With my rare disease, fatigue is a real issue, and I’m currently recovering after several big days of attending funeral activities for a close friend’s loved one. I love what you shared about looking at it like waves—to ride each wave as it comes. Wonderful post. Thank you.
Thanks so much for sharing your story! I can completely relate to the one step forward two steps back thing that is healing. Then again, I’m tempted to believe that life in general is a non-linear path.
I think that’s probably true. So much in life doesn’t follow a smooth upward path.
This is a really great post. Most of the points are brilliant but esp the Riding the waves and the unsteady trajectory. #TalkaboutitTuesday
Thanks so much, Lydia.
This is such a wonderful and helpful post. I am sorry for all you have had to go through but most grateful you are using your experience to help others through these lessons. I never knew the full extent of this diagnosis, yet each of these points can be applied to many health challenges. Thank you!
Barbara, isn’t it a blessing to be able to look back at some of the most challenging seasons of our lives and find that God was there and that He somehow redeemed all that we experienced.
Readers who are living in a hard place will find such hope and grace here. And we’re always hoping to gather those mercies in our lives . . .
Thanks so much for sharing this post, Barbara. As I think about my own recovery process, I can relate to so much of what you have written here. What a blessing that you are able to look back on this difficult journey and draw so many helpful lessons from it.
A nurse told Randy something in when I was in the hospital that has encouraged me many times. It relates to what you wrote about the “unsteady trajectory of healing.” She said not to compare how I feel day to day, but rather week to week or even month to month. I tend to want things to be all better and back to normal ASAP, so this was a realistic reminder that healing takes time.
I have greatly appreciated reading your posts these last several weeks. Also looking forward to starting back up in our writing group again.
Thank you for sharing your story. I am going to share this with a FB group that I have. It is Renew: Christian Support for Chronic Pain/Illness. I have suffered for 11 years with trigeminal neuralgia. God has truly ministered to me through difficult, but surprisingly amazing years.
Barbara, such wonderful insights for anyone also going through or having been told of their own medical diagnosis. Thank you.
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Barbara, thank you for being vulnerable and transparent here. As someone with several chronic illnesses I appreciate your words.
Thank you so much for sharing with Sweet Tea & Friends this month.
xo